My endometriosis interview with BBC Three Counties.

I recently had the pleasure of being interviewed about my experiences of endometriosis on the lunch show on BBC Three Counties Radio, presented by Nick Coffer. It was a fantastic day and I’m really pleased I had some time to discuss this topic at length. I think Nick was very knowledgeable and asked really insightful and intelligent questions.

If you are in the UK you can current listen back to the show on BBC iPlayer here (starts at 41 minutes in). For those of you who are unable to access the recording I have written up the interview below. Enjoy!

With BBC presenter Nick Coffer.

NC: Let’s talk about a condition that is very common but little spoken about. I say very common as two of my very best friends have it. Apparently 10% of women of what we call reproductive age have endometriosis. It’s a condition that can cause chronic pain, fatigue, fertility problems. Claire Barker from Hertfordshire is with us, and clever, as she is doing a PhD in Psychology. Does this make you super clever?

CB: Oh absolutely <laughs>.

NC: Claire was diagnosed with endometriosis in 2014 after 1  years of symptoms, and she started her own blog- it’s called ‘The Endo The Wold?’ and it’s about her experiences with the condition. Endometriosis for me is one of those words that is very much in our common consciousness but we don’t actually know much about. I put it along things like PCOS. These things that are very specific to women. We have friends who have them, we have heard of them, occasionally they will pop up in ‘OK! Magazine’ or a celebrity will talk about them, but actually we know very little about them in the public.

CB: Yes. That’s there is some data to suggest that for the general public about 20% or less of people know what endometriosis is and can accurately describe it.

NC: We know it’s pain, we know it’s discomfort, and we think of it as being related to the reproductive system. So what is happening? What is your body doing?

CB: Ok. So, with endometriosis, cells that are similar to the cells that line the uterus that you usually shed during your period, those similar cells are found outside of the uterus- usually in the pelvis, and implant on other organs and tissues.

NC: Bad cells!

CB: Exactly. They respond exactly the same way that the cells inside your uterus do. So they are responding to hormones throughout the month, then they break down when you have your period and start to bleed. The problem with that is that when they are outside the uterus the blood has nowhere to go- this can cause lots of pain, cysts, adhesions…

NC: You mentioned periods four times there, and therein lies the problem because the symptoms can be similar to bad period pain can’t they? They are cyclical, they can involve blood, and they can be somewhat written off.

CB: Yeah. There is a cultural element to that as well. Periods can be difficult to talk about. And endometriosis can run in families, so if you’re struggling with those symptoms it’s possible that your family have as well. So when you’re complaining that you have painful periods your mum or gran will say they did too, so it completely normalises the pain for you, and then your opportunities to seek out help are reduced from there.

NC: But this goes back a long way to the turn of the millennium for you. You are now 29 so you’ve really been dealing with this since the age of 14? That’s a long time to go without anybody saying ‘OK Claire, this is where we’re at’.

CB: Yeah! It was an absolute nightmare to be honest with you. I first started going to my GP when I was 12 years old complaining of crippling period pain. But as the years went on, and I didn’t have any kind of diagnosis, I was adding a menagerie of strange symptoms like fatigue, bowel pain, chest pain…

NC: Can I just say anyone who uses the word ‘menagerie’ on my program is welcome back any time! Can you say it again? I like it!

CB: <Laughing> I was adding a menagerie of symptoms over time.

NC: You make symptoms sound so lovely!

CB: I know. Seriously though it was awful. Just having all these things going wrong with your body but having no explanation for what’s wrong.

NC: That’s the thing isn’t it, having this firework effect of things going wrong, and at the same time being tired, being in pain, it’s worrying as well.

CB: It was really difficult. For two or three years before my diagnosis I was so ill that I was watching my life crashing down around me as it was so hard to do my PhD, or maintain my relationships, and I was engaged at the time, and everything was so difficult. And when you’re constantly told that you’re ‘fine’ what can you do? What help can you get? How can you communicate what’s happening to anyone?

NC: Are you saying that the endometriosis had led to the breakdown of good relationships in the past?

CB: Most definitely. But it has also been hard to maintain my friendships too when you aren’t well enough to go out and you are not yourself anymore you know, your depressed and low and anxious. You’re not the same person and more and people see a change in you. But because you don’t have a diagnosis how can you communicate these experiences to anyone and be believed?

NC: It’s quite a pernicious condition when you think about it, because it attacks the very things that define you as a young woman. It attacks your energy levels, it attacks your mood, and I’m making assumptions but it attacks your ability to have a fulfilling sex life as well because if you’re feeling that rubbish and that much in pain we can join the dots on that. So it really goes to the heart of you as a young woman.

CB: It does, exactly, you’ve hit the nail on the head there. Endometriosis strikes in the prime of your life, unlike many conditions. I don’t think there are many diseases that can affect you both physically and mentally and every aspect of your life like endometriosis can. Particularly if you are struggling around diagnosis. It can be devastating to women’s lives.

NC: Talking about diagnosis here’s the bit I don’t understand. Surely if one in 10 women of your age suffer from it, it should be at the top of every GPs list?

CB: I know! There’s lots of different reasons why there is such diagnostic delay in endometriosis. The evidence suggest that it takes an average of 7.5 years min the UK from women first going to their GP with symptoms to being diagnosed.

NC: How do they find it? What do they look for?

CB: OK, one of the problems if that there are lots of different symptoms. Chronic pelvic pain and sub-fertility are two but there are many others. Another problem is there is a lack of a good diagnostic test for endometriosis. The only certain way to diagnosis it is through a surgery called a laparoscopy.

NC: You’ve had two of those haven’t you?

CB: Yeah I have.

NC: And what happens there, bearing in mind this is a lunchtime show.

CB: <Laughs> Don’t panic, it’s fine. It’s a keyhole surgery where they make a few small incisions, and they go in with a camera and have a look around your pelvis. And the surgeon, if they’re highly trained, are able to see the spots of endometriosis where they occur.

NC: So they can actually recognise it…

CB: Yeah. So it can look very different- it can look yellow, it can look black, it can look red, it can look really different, so you need somebody who is very highly trained to recognise it. They can also treat it at the same time.

NC: They basically scrape it away don’t they?

CB: Yes, ideally, they cut it out, which is what I’ve had. And hopefully you feel a whole lot better afterwards.

NC: Am I right in thinking that fundamentally this is it- it’s a chronic condition that never goes away?

CB: Yeah. There is no cure for endometriosis. But there is hope. I mean since I had my last surgery over two years ago I still feel like a different person. And there are lots of things that can be done to help. So I think that getting that diagnosis and then working with a doctor who really knows their stuff is the way forward.

NC: As a broader question, are we guilty for trivialising women’s symptoms? We are very quick to take the mickey or say ‘oh it’s just period pain’. But is this part of the problem?

CB: In a nutshell- yes! This certainly does happen. It happens on a micro level in your family but there is a wide attitude in society- with GPs and employers, like this. Lots of times I went to the GP and was told I’m just unlucky and that periods hurt. I think that because periods are such a common thing-half the population will have them, but most people don’t suffer horrifically so there can be a real lack of empathy there.

NC: Now you’ve got your baseline- you’ve had your surgery, how do you go about, and I’ve read your blog, leading a fulfilling life?

CB: With difficulty to be honest. This is something that was really interesting to me. I always thought when I get a diagnosis and treatment for whatever is going on with me, everything is going to be fixed and back to normal. But if your life has been falling apart for some time then it isn’t going to be fixed in one surgery, it’s a real process. For me it involved a mixture of counselling, diet, and exercise.

NC: As a PhD Psychology student have you resorted to traditional counselling to get your sense of self back on track?

CB: Yeah I had to. That’s been a big part of the journey for me. Obviously, I spent over a decade being told that I wasn’t sick when I was, so that brings up a lot of feelings like anger to work through. And I think realising that I have limitations placed on me that I didn’t know I had before. But I wanted to work through these. So counselling has been so helpful to me and I would highly recommend it to others.

NC: What’s the prognosis for you? I know you have a partner now, are you able to contemplate things like marriage and children? Can you talk about this stuff? I imagine communication is such an important part of living with the condition.

CB: It is. I’m actually married now…

NC: I apologise to your husband to demoting him to the rank of partner! <laughs>

CB: It’s fine. I am married and I was diagnosed shortly after we became engaged actually. When I woke up from my first surgery I was told fertility would be a big problem for me, and so that throws up this awkward conversation we had to have where I had to say you know ‘I love you and I want to marry you, but you have to be sure you’re OK with the fact that kids may not be in our future.’ That was massive deal. And we’ve been fine you know, we’re together. Fertility is something that has proven to be a struggle for us, but that’s something that we are working through together at the moment.

NC: I know it’s the worst thing in this situation when you’re going through fertility problems, but my best friend was given the bleakest prognosis for fertility when she was diagnosed with endometriosis and she went on to have a daughter, so it can happen. It’s not entirely bleak, I’m sure you’ve been told that there are options available for help.

CB: Yeah. And I think it’s important to have a positive outlook as much as that’s possible. It aint over until the fat lady sings as they say. So it’s important not to write yourself off until you’ve explored all possibilities.

NC: So the blog itself, why did you start it?

CB: Well…

NC: I know the answer by the way, it’s because you thought of such a great name! The Endo the World?

CB: Ha yeah! I was so happy when that wasn’t already taken. When I as diagnosed it certainly felt like the end of the world. And I thought I’ve just been diagnosed with this life changing condition, now is a good chance to document my story as I love to write. It was also a way to connect with other women around the world, and that’s been one of the best things about it for me I think. It’s so weird- I’ve talked to people from Hawaii, Canada, France, to know that people everywhere are living the same truth as you.

NC: As somebody who has also lived the blogging experience I know how powerful it can be. You can find Claire’s blog at theendotheworld.com. And rather spectacularly, you can find Claire on Twitter as @EndoLadyUK. It does make you sound like a superhero.

CB: That was the plan. I’m thinking about wearing a cape full time <laughs>.

NC: If ever there was a book or novella in that, it would have to involve Endo Lady UK. So go and follow Claire- she’s lovely. And I know you are a big advocate of Endometriosis UK who have been a big help to you haven’t they.

CB: Absolutely- they’re fantastic. Go check out their site- there is loads of top quality information on there.

NC: You’ve been lovely, thanks for coming on.

CB: Thanks so much for having me on the show.

NC: You’re welcome, these things deserve a platform. And I have no doubt at all that a number of my regular listeners are in a similar situation.

People keep telling me that I am ‘brave’ for sharing my story so publicly, but it doesn’t feel that way to me and I enjoy it. It is not my fault that I have endometriosis and I am not ashamed of it. As far as I’m concerned I’m much more brave for living with this horrible condition everyday!

I’d love to hear your thoughts on the interview, and your own experiences of endometriosis.

Much love,
Claire
xxx

NICE publishes new guidelines for endometriosis care.

Great news- NICE have now published their new guidelines for the care and treatment of endometriosis. It is hoped that this will be a step towards reducing diagnosis time and improving the quality of care that women with endometriosis receive in the UK. You can access the full guidelines here.

I am so excited to see how much media coverage this has produced over the past couple of days. It’s always joyous to me seeing endo getting the attention and publicity is so desperately needs. My favorite coverage includes an article in The Guardian, a feature on the Victoria Derbyshire Show,  and a piece on Newsbeat.


I was also given an exciting (and very last minute) opportunity to discuss my own experiences of endometriosis and my reaction to the new guidelines on ITV lunchtime news with Alastair Stewart. I’ve been really touched by the positive reaction this short interview has relieved and am so glad I could contribute to the discussion in my own small way.  You can watch the full interview back here.

I’d love to hear your reaction to the NICE guidelines? Do they go far enough and do you think they will make a real impact for women with endo?

With love,
Claire
xxx

Ten tips for living well with endometriosis from the EUK Information Day.

A little while ago I attended an Information Day hosted by Endometriosis UK in London. It was mainly aimed at newly diagnosed women and their friends/ families, but I thought it would be fun to go along to catch up with people and to hopefully pick up some new tips.

Image result for endometriosis banner long

Image credit: Endometriosis UK

I thought it might be useful to share some of the useful tips I picked up along the day for those of you who wouldn’t be there in person.

1- Find and build your tribe.
Having endometriosis is really rubbish, and can feel very isolating and frightening. Invest time and effort building up a support network of fellow endometriosis suffers (aka your ‘tribe’) as they are more likely to understand and relate to your struggles than your family and friends who do not have the disease. Fellow patients can also be an excellent source of information and advice. You can start building your tribe through local support group or online support groups.

2- Specialist nurses can be a valuable asset in your journey.
If you are being treated in a BSGE centre for endometriosis, there will be a specialist endometriosis nurse at the hospital whose role it is to support you and to  advocate on your behalf. These nurses have a wealth of knowledge and experience about living well with endometriosis, and also have more time available than consultants to discuss your history, goals, and treatment options. If you are being treated at a BSGE centre, but aren’t offered an appointment with a specialist nurse raise this with your medical team.

3- You are the CEO of your body.
When you have a debilitating disease like endometriosis it can be easy to feel that you lack control over your body. However, we can exercise a lot of control over many of the factors that influence pain; such as sleep, diet, exercise, and stress. Take ownership of your body one step at a time and you are likely to start feeling positive effects. The Pain Toolkit can be a really useful starting point for this. As can keeping a pain diary.

4- Exercise is your friend.
It can be very gentle and take place at home. Start small and build up, but regular movement promotes general health and can help to reduce pain thanks to endorphins. Many women at the event shared their experiences and the consensus seemed to be around yoga, swimming, and pilates as particularly helpful.

5- Endometriosis is a highly individual disease.
There are no quick fixes or easy answers. What works some for some people won’t work for you, and vice versa. Don’t get discouraged. Take time to get to know your own body, and think through what matters to you before deciding on a treatment strategy.

6- If you don’t ask, you don’t get.
Whether it be a specialist endometriosis nurse or a referral to a pain management team, you’re often only likely to be offered services when you have directly asked for them. Do your research about what services are available, and make sure you advocate for yourself. Services are out there to be utilised.

7- Progress is being made to improve the patient journey….
During the Information Day the presenters discussed the new NICE guidelines for endometriosis which will soon come into force and will hopefully positively influence patient care. Other initiatives aimed at improving research funding for the disease were also raised. This is all really positive progress and shows that endometriosis awareness is continuing to grow. This can only have a positive impact on us as a patient community.

8- …But conversely, lots of the old myths still exist!
Lots of the ladies present at the Information Day said they had been advised by their doctors to have a baby or hysterectomy as a cure for endometriosis. The debate about the benefits of excision vs ablation surgery was also discussed. The take home message- see the most experienced doctor you can and view all information provided with a critical eye. You are the CEO of your own body after all, don’t do anything you’re uncomfortable with.

9- Endometriosis is a life changing illness.
Don’t let anybody undermine your experience or tell you otherwise. Yes it’s not cancer, and no it’s not likely to kill you, but it’s still a pretty big deal.

10- There is hope.
There were lots of women with endometriosis at the Information Day who have been diagnosed with endometriosis for a very long time, and who had learned to thrive despite the awful experiences they had endured. Carol Pearson gave a particularly inspiring speech which reiterated that sometimes you don’t ended up living the life you would have planned for yourself, but that life can be one hell of adventure anyway. Oh, and she also reminded us to keep shouting loudly about endometriosis whenever you can. Change can and will happen for endometriosis, and we have such power to bring that about from within our community.

I hope this was useful. Sometimes it’s good just to reinforce the important tools that we know, as knowing and doing can be two separate things! I’d also love to hear your single top tip for living well with endometriosis!

Love,
Claire
xxx

Research priority setting for endometriosis- the top ten questions announced!

A few weeks ago I had the privilege of taking part in the James Lind Alliance priority setting workshop for endometriosis, which took place in London. The aim was to bring together a mix of healthcare professionals, patients, family members, and carers to decide on the top ten questions to be prioritized in future endometriosis research.

It is hoped that this exercise will also attract new funding opportunities for endometriosis research, which is so important considering that endometriosis is hugely underfunded when compared to other conditions.

It was a grueling but fascinating day, and the culmination of a much longer process of consulting with professionals and the public on this topic. I felt so proud to be there representing women with endometriosis, and I made sure I spoke up to reflect my own experiences and that of the women I’ve come into contact with over the years.

The top 10 research priorities have now been published, which you can read below:

This work has also just been published in the medical journal The Lancet (see here), as well as in the popular press (see here) if you want to find out more. You can also find out the full details about the work on the James Lind Alliance endometriosis page (see here), which includes the ranking of the top 30 questions included.

I’d love to hear your thoughts on the final top 10. What do you think is missing and what would be in your top ten?

Love as always,
Claire
xxx

What doesn’t kill you…tales from my most recent hospital appointment for endometriosis.

I recently had a hospital appointment at an endometriosis specialist centre in London.  I promised I would update you all, and lot’s of people have contacted me to see how things went, so I thought I’d do a quick post to spill the beans. I am the most open of all books after all.

For those of you not in the loop, I had excision surgery 18 months ago at this hospital to treat my severe endometriosis- including on my bowel, diaphragm, utersacral ligaments, and pouch of douglas. I also had an endometrioma removed from my right ovary.  Oh, and since my body hates me apparently, I also have adenomyosis, but have not had any treatment for this to date.

A quick word to the wise. I know a lot of people associate my case with Mr. Cutner, as he was the surgeon who performed my excision. However, I did not see him at all during this most recent appointment, just to be clear so he isn’t tarnished by any subsequent whinging that happens in this post.

Anyway, ‘happy’ reading…

Why was I referred back to the endometriosis center?
For the past six months I have been experiencing a recurrence of some of my endometriosis symptoms. This includes right sided ovary and abdominal pain and random  stabbing pains in my shoulder and chest. I’ve generally been pretty well since my surgery, but have had two debilitating flare ups- one of which lasted for six weeks. We’ve also been trying (with varying amounts of effort and enthusiasm) to conceive for over a year now. After speaking with my GP I decided I would like to go back to UCLH to see what’s going on with my endo/adeno, before consulting with a fertility specialist.

Following a referral process which would test the patience of a Tibetan monk on sedatives, and a two month wait, I was on my merry way to London with Mr. B with a head full of trepidation and a heart full of optimism.

It’s wasn’t the most fun train ride ever. I get so grouchy before appointments.

What happened during my appointment?
I had two appointment scheduled for the day. The first was for a trans-vaginal ultrasound scan and the second was for a followup discussion with the doctor. I find trans-vaginal scans a uniquely humiliating and awful experience, but I won’t dwell on that here today- that’s for a future post.

I would also have seen the endometriosis specialist nurse after my scan but she was away on training that day unfortunately. Still, this gave Mr. B and I time to visit the Star Wars Identities exhibition at the 02 arena in the four hour gap between appointments because, you know, compromise (he listens to me incessantly wailing about my lady parts, I embrace what to my mind is an irrational obsession with space stuff).

What were the test results?
So, the good news. According to my scan results my endometriosis does not seem to have returned over the last 18 months. Yay for me. I do have another endometrioma on my right ovary but it’s tiny (about 1/4 of a cm), and I have a couple of ‘flimsy adhesions’.

The bad news. My adenomyosis is worse. I now have some nice chunky adenomyomas making themselves at home in my uterus muscles. When expressing my unhappiness about this my doctor replied ”well, your adenomyosis was bad before and it’s bad now.” FYI physicians- THIS IS NOT COMFORTING!

They also couldn’t really offer an explanation as to why my abdomen and right ovary have been feeling like they might explode. To my mind my adenomyosis, endometrioma (no matter how miniature) and adhesions seem to be very strong candidates, but the team said no- and hey, they’re the experts right?!

What action was recommended going forward?
During my afternoon appointment I was presented with a choice- what is more important to you- pain management or fertility? The recommended course of action would differ significantly depending on what I choose.

If it’s pain management, then they’d recommend radical action for me. Possible removing my uterus and/or ovaries, then hormones. If it’s fertility then this isn’t possible, or obvious reasons.

I said that fertility is the bigger priority right now, so I was advised to speak to my GP about getting a referral to a fertility specialist. If the fertility clinic advise having a laparoscopy then the endometriosis centre will happily do this, but for now there is basically nothing they can do to help me.

This basically sounds positive- why are you being so grumpy?
I came out of my appointment feeling quite annoyed and underwhelmed, and four days later I still do. There are several reasons for this I think:

Firstly, I’m kind of stuck in a halfway house still and don’t really feel like I’ve made much progress on my journey. I don’t know why I’m in pain  and if I will ever be able to have a baby. Also, there’s a part of me that is worrying that my endo has actually come back but it just isn’t being picked up on the scan :/

Secondly, my doctor literally gave zero shits. It was palpable. I know everyone gets desensitized when regularly exposed to tragedy, but at least pretend to care. I told him that I find it unacceptable and frustrating that I have to make a choice between my quality of life for the foreseeable future and having a family, and he was literally like this…

Yes this is my lot and there isn’t anything I or he can really do about it, but politeness and empathy can go a long way. After receiving my legendary death stare in response (my friends call it ‘the eye of disgrace’ haha) he recommended that i speak to my GP for a referral to a pain management specialist, which isn’t a bad idea.

He also went into full on patronizing/smug mode which is making me want to make him into a voodoo doll to stab. He told me to focus on the little things like I’m well enough to go out for a coffee. I was kind of like, well yeah, but this disease has basically stopped me from completing my PhD at Cambridge, ruined my self esteem, and if I need IVF is going to financially break me. Those are my goals- not coffee mate. But he doesn’t care about my goals of course. I will leave the clinic soon and they will not affect him anymore.

I could seriously moan about this guy all day, so I’ll stop there. Interestingly, a close friend of mine (who is very fair and reasonable and not at all an emotional hothead like myself) also saw this doctor recently and expressed similar feelings. Coincidence? I think not. Still over all the appointment was well managed and people were pleasant. I got the information I need to move forward which is all I wanted anyway.

Sorry about the ranty post guys, but well, you did ask. I’ve enjoyed being free from the merry-go-round of mediocre hospital appointments and I’m gutted to be getting back on again.

I’m also feeling a bit lost and lonely on this journey at the moment, but I know that many of you will know what this feels like. My life has changed quite a lot in recent months and I don’t feel like I have such a support network around me. But I am determined to manage my endometriosis and adenomyosis my way as much as possible. I’ve written before about how I want to avoid a hysterectomy if I possibly can, but I’m trying not to focus on this too much now. It’s a problem for future Claire to deal with.  For now I will up my efforts on the diet and exercise front to assist me to be as well as possible.

So this is my most recent mini drama that isn’t really a drama. I’d love to hear any of your experiences about life post excision surgery. I’m also really interested in hearing about your experiences at fertility clinics, I’m freaking out about this a bit.

Much love and thanks for reading!
Claire
xxx

Boom Shake the Womb!

A guest post by @LizzieBennett_ for endometriosis awareness month.

Life Lesson by Don Raye
The fierce wind rages
And I see how trees survive
They have learned to bend

Before

I’m 13 and I’m being prescribed the pill for irregular, painful bleeding. Apparently my cycle just needs to settle down.

I’m 14 and I’m being rushed into hospital to have my appendix removed. Only when it comes out it looks like it isn’t the culprit after all.

I’m 15 and I’m put on the contraceptive injection because I’m still bleeding for two weeks at a time and being physically sick from the pain.

I’m 17 and I’m asleep on my mum’s bathroom floor for the second night in a row, because the cold floor is the only thing that will ease the pain in my lower back and I may as well be somewhere that I can vomit.

I’m 18 and I finally see a consultant. I’m too young to have endometriosis she assures me, but after pressure from my mum she agrees to do the operation to rule it out so that we can focus on the other ‘much more likely’ causes. She gives me surgery for a bet.

I’m 18 and she pulls back the curtain after my surgery to inform me without kindness that they did find endometriosis on the back of my womb. It is now removed and she’ll see me for a follow up. She never did and I did not receive the slightest advice on how to manage an incurable chronic condition. Everything I ever learnt is from charity websites and women’s magazines. I have never underestimated Marie Claire.

I’m 20 and I’m back to bleeding for weeks at a time. I’m informed that further surgery should be a last resort and I need to find hormonal alternatives. They give me the implant.

I’m 22 and the implant has to be swapped because it’s not longer effective. Surgery is not an option.

I’m 24 and the implant has to be swapped because it’s not longer effective. Surgery is not an option.

I’m 27 and I bleed for eight weeks over Christmas and New Year. I’m extremely bloated, and uncomfortable. I have a constant bearing down sensation in my back and cramps in my legs. I often cannot get out of foetal position because of the pain. I’m exhausted and I find it difficult to open my eyes in the morning; I worry that I am becoming depressed. My anxiety is through the roof, but who can blame me when my whole body feels like it’s against me?

I’m 27 and I’m seeing a private consultant. I’ve been unable to move from my bed and have been experiencing labour pains when I bleed. The pain is now also present when I don’t bleed. I’m asked to rate the quality of my life. I circle ‘0’.

I’m 27 and the consultant shows me pictures of my womb. She’s removed endometriosis covering the left side of my womb and the pouch of Douglas. My womb collapses when it is touched, the muscles have deteriorated. She suspects adenomyosis. As my mum is crying next to me all I can think is ‘Thank God someone believes me, thank god it’s not all in my head’.

I’m 28. It’s the day before my best friend’s wedding and I can’t stand up straight because of the pain. I’m so tired from not sleeping that my vision has started to blur. I manage the pain with tramadol, codeine, and jäger bombs, but I know I was close to not being able to be there. I consider how much more I am willing to miss for this disease.

I’m 28 and I’ve decided to have a hysterectomy. I’m on a drug that has shut down my pituitary gland. I am so sick I honestly feel like I am dying. Someone asks me what I do all day now that I can’t work and I’ve had to take a leave of absence from my PhD. I survive, I tell them, every ounce of my energy from the second I wake up to the second I go to sleep goes into surviving. I google my first consultant for my PALS report and it transpires she is writing a book on cultivating ‘compassion’ in the NHS. Yep. Compassion.

I’m 28 and I’m doing the compulsory pregnancy test before my hysterectomy. The fact that I haven’t had sex with anyone for two years apparently doesn’t mean I can skip it. I’m at peace with having family in whatever way it comes, but I can’t help but remember the daydream I’ve said since I was a teenager of waiting for my partner to come home and greeting him with the test in my hand and hugging each other with mad joy. Tears fall silently down my face in the starkly lit toilet, whilst I pee on a stick. No hope of a positive test. No partner.


After

One of things that I did not expect after my operation were the irrational feelings occasioned by the trauma of my muscles inside. I had read that sometimes your other organs go into shock at the removal of the womb, but I hadn’t been prepared for my body literally feeling like I had given birth. In semi-lucid moments in those first couple of weeks I would wake up reaching my arms out and wanting my baby. It was, even for someone not naturally broody, pretty horrific.

For the next few months after the operation I would quite often have to leave nights out, or lunch dates, early to cry. I wondered if this was a delayed grief, but in retrospect I think it was a combination of extreme tiredness and sheer, abject relief. Relief that I had made it through those long months, relief to be past the fear of the operating room, and relief to finally have my body back on my side after 15 years.

Probably one of the hardest things about my illness as young women has been painful sex, and bleeding during or after it. On top of which, the irregularity of my periods has always meant that I could come on at any time. So on a date when the glasses are being cleared from the table, and they’ve inched their chair over, and I’m laughing and playing with my hair, and they say do you fancy coming back to mine for a drink? My first thought has never been ‘get in’, or ‘I thought you’d never ask’, but ‘have I got sanitary stuff with me?’ Or ‘what if I bleed in the middle or it, or in the night if I stay?’ And if this doesn’t put me off entirely, it means that I look like I got incontinence issues, because I constantly go to the loo to check that I haven’t started gushing blood at various stages of what should be that amazing/awkward/disappointing first hook up.

No one wants Jaws the movie on their first date.

Then, let’s say it goes all right, and you find someone brilliant and understanding. Those things don’t just go away. It’s never going to be fun for someone to feel like they are hurting you when you are being intimate. Sex becomes bound up with worry. I have found that this means that I hold something of myself back during the moment. People sense when they are not getting all of you, and it has implications.

I am now one of the lucky ones. However, there are still consequences for the rest of my life. All of the literature for post-hysterectomy sex is geared towards intercourse with your ‘loving husband’. I’m 28. It could very likely be an intoxicated encounter with a tinder date. Even once I’m passed the initial terror of being naked with someone again, at what date do I casually slip in that I can’t have children the conventional way? Admittedly I was ambivalent beforehand, but ambivalence is a topic that can wait. None of this means that it was the wrong decision; I feel extraordinarily well and happy and optimistic about the future. However, the right decisions are still hard decisions.

So, why am I writing this? Because one of the most important things anyone can do to raise awareness is to tell their story, and for others to share the stories that women tell. It legitimates the experience of women with endometriosis. It sends a message to young girls to trust their bodies. And, hopefully, it may give them the strength to persist with getting a diagnosis when they are told that it’s just ‘normal period pains’.

I can assure you – nothing about my young life with this disease was normal.

As well as difficulties I have faced, I have been lucky enough to also receive fantastic care and wonderful acts of kindness. From the nurse who took my blood and told me we have to make decisions that are right for us at the time, to the porter who held my hand as he wheeled the trolley in to the operating theatre, and the physiotherapist who spent an hour with me before my operation and made everything about those bruising, brutal first two weeks of recovery a bit more bearable.

I have seen great changes in the last ten years in the way that endometriosis is spoken about and treated, and I look forward to the seeing what is achieved next ten years. However, I am aware that for some women it is already too late. These women have met the loss of hopes, dreams, jobs, and relationships with bravery and grace. This piece is written for them.

For further information or for anyone who would like to support or donate to a charity during endometriosis awareness month:

https://www.endometriosis-uk.org/

http://www.adenomyosisadviceassociation.org/

http://www.hystersisters.com/


Elizabeth Bennett is a folk singing, footpath walking, gin drinking PhD student. Having been diagnosed with endometriosis at 18 after 5 years of G.P. appointments, she took the decision to have her uterus, cervix, and fallopian tubes removed at 28, in order to regain her health and restore a sense of self. With her brilliant friends and family she had a stitch and bitch hysterectomy party ‘Boom Shake the Womb’. She has not met Mr Darcy yet, but she has a sneaking suspicion he may arrive in the form of a Sussex Spaniel.


You can tweet Elizabeth at @LizzieBennett_

Have a story to share? Email me at endomyworld@gmail.com

I am currently featuring on The Fertility Podcast to raise awareness of endometriosis.

It’s March 1st- which means it is now officially the beginning of Endometriosis Awareness Month! I’m really excited for all the articles and events planned to raise awareness of this horrible disease over the coming weeks!

I recently had the privilege of being interviewed about my experiences of endometriosis (and infertility) by Natalie from The Fertility Podcast. I will not stop until the whole world knows about my broken lady parts- and why this is a big deal! 🙂

You can check out the full podcast here.

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I’d love to know what you think of the podcast. Do my experiences resonate with your own? Have you had experience of infertility or IVF? (Also, I am always here for any of you affected my infertility/ endometriosis who needs somebody to talk to, so please do get in touch if needed. Please don’t suffer alone- a problem shared really can be a problem halved).

With love,
Claire
xxx

Can you help to shape future endometriosis research?

Hello lovely endosisters! I hope you are all as well as can be today.

I’m writing this post to update you all about an exciting research project I have had the privilege to help develop over the past year as a member of the Radcliffe Women’s Health Patient Participation Group (University of Oxford). We are hoping to establish a set of core outcomes which can be used in future endometriosis research, which will then make it easier for scientists and healthcare professionals to compare the results of various studies and gain a deeper insight into the disease.

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This post is also a little bit of a call to action and a plea to ask you to take part in this research. Participation involves completing three online surveys over the course of a few months, where you will share your experiences of endometriosis and views on what outcomes doctors and researchers should be prioritising when working to improve the quality of treatments and healthcare we receive.

We have made a short video that explains what we are doing in greater detail:

If you would like more information or to take part, you can visit our sign up page here.

Please do get in touch with me directly if you would like any further information or have any questions. Alternatively, you can contact lead investigator Dr. Martin Hirsch (Queen Mary, University of London) by email: m.hirsch@qmul.ac.uk.

I really am hoping the endometriosis community supports this exciting research opportunity. We can hardly complain that there is a lack of research into endometriosis (which is clearly true and a real injustice when you consider how many people are affected) but then not support the projects when they do take place.

I’d love to hear your thoughts, and whether you’ve been involved in any research projects yourself. Please do share this (on your own blogs and/or social media) with any other endosisters you know who might be interested in taking part- the more voices we have to contribute the better!

With love,
Claire
xxx

I recently featured in PopSugar UK’s article about living well with endometriosis.

I was recently lucky enough to be asked to contribute to PopSugar UK’s article aiming to share tips about living well with endometriosis. The article was written by our fellow endosister Tori Crowther, and you can read the full post here.  (Oh and I am ”Claire from Hertfordshire” in case you didn’t guess that already :D).

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I think it’s really important as a community that, as well as raising awareness, we share tips and coping strategies to support each other.  Living with this disease is difficult enough without stumbling in the dark alone right? I know that for me, seeing that there are women who are able to live well with endometriosis, and hearing about how they achieve this, is really encouraging and helps me to feel less hopeless and scared.

Do you have any tips to share about living well with endometriosis? If so, I would love to hear them! This illness affects us all so differently, which opens up many possible avenues for coping with and combating symptoms.

Take care,
Claire
xxx

MPs will debate decommissioning IVF on the NHS- I’ve had my say, now it’s your turn!

On Thursday 19th January 2017, MPs will be debating whether IVF should continue to be provided by the NHS.

While this is a good opportunity to highlight the plight of those experiencing infertility and to highlight some of the injustices that exist around accessing fertility treatment (e.g. the postcode lottery) I find it incredibly frustrating that such a vital service could be removed from the NHS in the near future.

A Facebook group has been set up by MP Steve McCabe for the public to express their views on this matter, which you can access via this link. I strongly encourage those of you living in the UK to contribute to this if you feel able to, whether you have been directly affected by infertility or not. (A word to the wise though- LOADS of my Facebook friends ‘liked’ my post, so it’s not the most private method of airing your views on this topic!)

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One day I will snap.

Personally, I’m so angry about this! Women with endometriosis are high users of IVF, since the disease is one of the leading causes of infertility in women, and so as a community we stand to loose so much if these services are decommissioned. This breaks my heart as I feel that we endosisters have suffered enough already and do not need or deserve the added stress of being unable to access fertility help.

As some of you may also know, 2017 is the year that I am hoping to access fertility treatment, so WHY THE HELL IS IT GOING TO BE DECOMMISSIONED NOW?! I’m not the type to be prone towards paranoia but it does feel a little bit like the world hates me.

There are also some sinister undertones to this debate that I think are really ugly. Like  how infertility is only the result of ‘lifestyle choices’ and that it’s just tough luck to those that experience it. We need to challenge such thinking NOW, because if IVF is decommissioned on the NHS it’s very unlikely that it will be reinstated.

I uploaded the following comment to the Facebook page:

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I could have written more, but I started loosing the will to live to be honest with you. I am sure this will turn out to be a frivolous exercise, but it still feels good to publicly air my frustrations and contribute in my own small way to the debate.

I have also emailed my local MP Sir Oliver Heald to ask for his support in this matter, but looking at his profile (rich, white Conservative, old) and his voting record I’m not going to hold my breath that he is going to be a champion of women’s (health) rights. I would certainly encourage you all to contact your own MPs ASAP too though.

What are your thoughts on this matter? Do you think IVF should be covered fully or partially by the NHS, or do you think it is a luxury that should be funded privately? How will it affect you if this service was taken away? I’m also interested to hear from all you endosisters outside of the UK about your experiences of accessing and funding fertility treatment.

Take care all, I know this is an emotive subject and I only wish luck and happiness to each of you.

Love,
Claire
xxx