adenomyosis

Endometriosis Awareness Month- Live twitter chat this Sunday!

/ Endo Lady UK / Leave a comment

It’s March, which means is Endometriosis Awareness Month!

I will be co-hosting a live Twitter chat THIS SUNDAY (7th March 2021) at 20:00 GMT with Dr. Martin Hirsch and Dr. James Duffy in collaboration with Cochrane UK. I hope you can join us to support, I’m sure it’ll be fun and informative. The hashtag is #MyEndometriosisQuestion.

Further information is available here.

I’d love to hear what you have been doing to mark Endometriosis Awareness Month this year? Let mw know too if you’ll be joining us on Sunday!

With love,
Claire
xxx

Menstrual Health Coalition publishes call to action on Heavy Menstrual Bleeding.

/ Endo Lady UK / 1 Comment

I can vividly remember being thirteen years old and sitting awkwardly across the desk from my middle aged male GP as he asked me what bothered me more about the periods I was complaining about- the pain or the heavy bleeding. ‘Errrr both?!’ I mumbled, completely mortified. I’d never really thought of it as an either/or choice before, but I was certain that both had been making me completely miserable; rendering my school life challenging and a social life impossible. I had never told this to anybody before, it was way too embarrassing, and besides- what counts as heavy bleeding anyway? I’d never exactly compared quantities with my female friends or family. Perhaps my periods were totally normal and this was just a fact of life I’d have to get used to.

Those of you who are familiar with my story from this blog will know that it took another decade after this meeting for me to finally access the treatment I needed (for what turned out to be severe endometriosis and adenomyosis) to live a happy and healthy life. Research shows that I am not alone in this situation, as around 20% of women are believed to experienced Heavy Menstrual Bleeding (HMB) during their lifetime, with many requiring multiple visits to their healthcare providers before being correctly diagnosed and treated. HMB is also a leading cause of gynaecological admissions to hospital and hysterectomies, but you may not know that, as like my younger self many women choose not to share their experiences owing to feelings of shame and embarrassment.

The great news however is that a new report published this week by the Menstrual Health Coalition aims to change all of this and get HMB up on the political and social agenda. The Coalition (which is made up of relevant politicians, clinicians, and charities etc) has examined written and oral evidence provided on HMB to put together its ambitious report.

 You can read the full report here.

The main findings are that the wellbeing of women with HMB is currently negatively impacted by:
1. Societal stigma around menstrual health.
2. Poor clinical awareness of the condition and treatments.
3. Inadequate and often disjointed services.

 To address these problems, the Coalition have provided a number of recommendations which include:
1. Educating school pupils about what constitutes normal and abnormal periods, and empowering them to be able to speak more openly about menstrual health.
2. Revising services to make better information available to patients and clinicians.
3. Improve commissioning.
4. Ensuring services are adequately joined up to improve the patient experience.

 While these findings and calls to action seem sensible and are likely to be very familiar to anyone who has experienced HMB, it is so encouraging to see this evidence gathered in one place and being promoted to the lawmakers and health professionals who have the ability to effect so much positive change in the lives of thousands of women.

I honestly believe the stigma around menstrual health has started to be worn down over the last few years and real change is taking place, and this report is just what is needed to keep pushing the issue forward.

 From my perspective the emphasis on education young women to know what constitutes a ‘normal’ period and empowering them to feel confident to speak openly about their menstrual health is going to be the game changer for future women to ensure they do not have to suffer as myself and others of my generation have. Knowledge IS power. It will be interesting to see if and how how the recommendation are enacted within schools and society over the coming years. The time for change is now and our actions must be louder than these words. The Menstrual Health Coalition means business and armed with this report has the tools it requires to suceed, so we have much cause for hope.

I’d be really interested to know your experiences with heavy menstrual bleeding, or your thoughts in the publication and content of this new report. What’s the biggest factor that you think could support women to promote their menstrual health?

If you use twitter you can follow the Menstrual Health Coalition on Twitter here.

A version of this post also appears in the Menstrual Health Coalition website here.

With love,
Claire
xxx

Little reminder: Your life with chronic illness matters.

/ Endo Lady UK / 1 Comment

This week I will attend the inquest into my dad’s death, which is going to be pretty rough. I posted six months ago that he had passed away but I had not said why.

The truth is my dad took his own life. This is a hard sentence to write, and is made worse because he did this terrible thing because he was chronically ill as decided he did not want to be sick or in pain any longer. To my dad, being sick meant his life had no value and he had no future to look forward to, so he decided to end things rather than face this increasingly bleak future as he saw it.

As somebody with chronic illnesses myself (both endometriosis and adenomyosis) the thought that my dad felt that being sick meant his life was worthless and his future hopeless is particularly hard to accept. We [his family] did not think these things about him or facilitate him feeling this way. This thinking is everything I try to stand against in my daily life and in my writing.

I tried to tell him everything would be OK. That he would get through it. The truth is I didn’t know that it would be OK, for him and for me. But through the years I have hit rock bottom a number of times because of being sick but have always come through the other side again eventually. You have to keep hope inside of you that life is cyclical and things never stay the same forever.

Being chronically ill is rough, particularly when young, and can easily pull you under. At times it can make you feel so demoralized and worthless it seems pointless to continue. For example, I wanted a big and rewarding career that I’ve worked hard to achieve, but now have to accept this is beyond my capabilities with my health being what it is. I still feel sad about this and I still cry sometimes but I don’t let it rule my life or dictate my self worth. Instead I have tried to find a job which doesn’t sap all my energy, which I enjoy, and learn to take please in some of the smaller things in life. I try not to compare myself to my peers, most of whom have not had to wade through the challenges that poor health present, as I have. What does it achieve anyway?

There was a time a few years ago, before my my surgery, when I felt my life was over and I was doomed to a life of pain, infertility and sadness because of my illnesses. Three years on I’m thriving and have a gorgeous baby son. I’d never have believed this possible such a short time ago after a decade of pain. I have spoken with some many endo suffers who have felt suicidal at one time or another and this breaks my heart.

So long story short, believe in yourselves my fellow chronic illness warriors. Things are rarely as bleak as they seem, I promise. You can do this. Your life matters and has real value, being sick can never take that away. Take one day at a time and ask for help if you need it. People will answer. Don’t be like my dad and throw your life away because you’ve given up hope and you’re scared. It leaves too many broken hearts behind, and there are no surgeries or pills that can ever fix them.

In a crisis you can contact your national suicide support phone lines here.

With love,
Claire
xxx

He’s here at last! My pregnancy and birth with endometriosis and adenomyosis.

/ Endo Lady UK / 5 Comments

I’m happy to announce that baby Barney FINALLY arrived five weeks ago. I say finally as he was fifteen days overdue (!) in the end and arrived by emergency c-section as he flatly refused to be born! 😀

I still can’t believe I have a baby boy after years of fertility struggles owing to severe endometriosis and adenomyosis. It’s really surreal but I don’t take a moment for granted, even in the most sleep deprived moments.

I thought I’d give a little overview of my pregnancy and labour journey on here as I never see much written about this online with regards to endometriosis and adenomyosis. I imagine my experience is pretty individual though as these diseases tend to affect us all so differently, but thought it might be useful to share anyway.

Pregnancy
Aside from morning sickness that lasted for seven months I was actually in a moderate to severe amount of pain at times throughout my pregnancy. This felt like a stretching and ripping pain which I attributed to my adenomyosis and adhesions having to stretch despite not being made of the most stretchy substances. The worst part was you can’t  take any heavy duty pain killers in pregnancy so I just had to just grit my teeth and get through it. It felt quite alarming at times but my medical team never really seemed concerned, and all was well with myself and the baby throughout the pregnancy thankfully.

Birth
I never went into labour naturally. When I was fifteen days overdue things were getting slightly ridiculous and the baby was getting distressed so I agreed to be medically induced. This kind of broke my heart as I was hoping for a natural birth but accept that these things happen. My induction failed however as I did not dilate past 2 cm- hence the emergency c section! (FYI- Being awake for major surgery is CRAZY! Not sure I’m keen to repeat that in a hurry.) Lots of guess work here but I wonder to what extent having a uterus riddled with adenomyosis affected it’s ability to contract and dilate. I imagine it didn’t help. Not sure why I didn’t go into labour in the first place though- stress perhaps?

Ultimately, although I didn’t have the birth I imagined I am just thankful beyond words that Barney is here and we are both safe. Recovering from a c-section is proving to be tough for me (currently on my second post-op infection- yay!) but I am just trying to look after myself and take things one day at a time for now.

I spent so many years thinking having a baby would never be possible for somebody like me with severe endometriosis and adenomyosis who had been trying for years without success. I don’t really believe in miracles or fate or anything but I’d like to offer some hope to other women in my situation that things can work out and that you never know what’s going to happen in the future.

I’d love to hear your fertility/ pregnancy/ birth experiences with endometriosis and adenomyosis. Do you feel these conditions affected your plans for a family? 

With love,
Claire
xxx

My fertility journey with severe endometriosis and adenomyosis: An ode to Heal Endo.

/ Endo Lady UK / 4 Comments

This post originally featured on the fabulous Heal Endo website. You can see the original version, along with a very kind into, here.

————————————————————————————————————

I remember waking up from my first laparoscopy with my surgeon hovering over me. ‘Good news, it isn’t cancer’ she said. ”Bad news, you have endometriosis and it’s really bad, it’s EVERYWHERE”. She recommended that I go to see my GP to have the Mirena coil fitted. ”Oh, and come back and see in a year when you’ve been unable to conceive, if that’s what you want” she added.

And that was my terrible introduction to the crazy world that is life with endometriosis. I was 25 years old. I had never even heard of endometriosis and no explanation was provided. Not that it was a huge surprise after some speedy Googling- I had been suffering with severe period pain, fatigue, bowel and bladder pain, as well as shoulder pain since I was 12 years old. These symptoms had worsened over time and become increasingly debilitating to the point where I was considering dropping out of my PhD studies as I felt too ill and exhausted to continue working. I was hospitalized with diarrhea so severe at one point that I almost died of dehydration! A year later a diagnosis of severe adenomyosis followed.

The news that I had a chronic and incurable condition that I would have to somehow manage for the rest of my life was more upsetting than the fertility bombshell at the time. I was only 25 and having children hadn’t ever really crossed my mind at this point, despite recently becoming engaged to my partner Simon. I joined a local support group and did lots of reading, and decided the best course of action for a chance of recovery and to boost my fertility was to have excision surgery, which I underwent in London two years later.

While excision surgery helped to reduce my pain and symptoms significantly, I soon realised there was a huge difference between ‘having less pain’ and ‘feeling truly well’. Two years post surgery I had also been unable to conceive which was making me feel anxious, depressed, and like a failure. Like many of my endo sisters I turned to natural approaches with the aim of prompting my health, and started following the ‘endo diet’ religiously. I cut everything- gluten, dairy, soy, meat. You name it, I didn’t eat it. I was also pretty miserable (I’m a massive foodie at heart) and didn’t feel that the endo diet was nourishing me in the way that I hoped, as I wrote about in my blog here. I was also punishing myself with heavy exercise daily with the thought that this was healthy and would help me to manage my pain better and to lose the weight I seemed to be gaining despite my attempt to restrict calories.

And that’s where my association with Katie from Heal Endo started. She contacted me saying that she liked my post and agreed that the traditional endo diet is not as healing as it could be and is often counterproductive.  Katie suggested that she could work with me and that with her guidance we might be able to improve my symptoms and make me truly well again. I jumped at the offer! I would try anything, although by this point I felt somewhat skeptical about the impact that a natural approach could achieve. Fertility, I insisted, should be placed on the back burner indefinitely. I knew my body needed to heal and was in no fit state to carry a baby as it was. Anyway, I felt defeated and was reluctant to spend huge amounts of money on IVF.

After completing a barrage of testing and paperwork documenting my symptoms and usual diet, Katie was able to devise an individualized eating and movement plan to start me on my journey to healing. I was slightly intimidated as it represented a huge change to my usual habits as a low sugar plan was recommended for me at first as my glucose scores were through the roof! Strangely , I grieved the loss of caffeine the most as my daily cups of tea had fulled me for years and had become somewhat of a comfort blanket. Instead of daily weight training and running I’d be walking. Still, I persevered and committed 100% as I knew this was an all or nothing opportunity.

What amazed me was how quickly my symptoms started to reduce when following the ‘Heal Endo’ approach. After about two weeks I noticed something truly remarkable whilst driving to work- for the first time in over a decade I was feeling well! I had energy! I actually felt happy! All this while eating more than ever too.

As the weeks rolled on this trend continued- my energy levels increased to what I’d call ‘normal’, my mood stabilized (no more ‘hangry’ my husband joked to his relief), and my bowel symptoms melted away. I enjoyed being able to introduce more foods over time with the focus on their healing benefits (such as pro-biotics) rather than the focus being on deprivation of what was off limits. Also, the food I was making was really tasty- even my husband (the ultimate sugar addict) was able to join in and was enjoying the meals.  Being abler to eat lots of organic grass fed meats, dairy, and vegetables was a joy.

But the biggest shock, three months into my work with Katie I fell pregnant completely unexpectedly. I am awaiting the arrival of my baby boy any day now. I will never forget Katie’s amazed and delighted face when I told her my news. It felt like a miracle but upon reflection I was feeling so well by this point I honestly believe my body was ready at last. Everything seems to have fallen into place, and I am so grateful to Katie and her Heal Endo method for this.

I cannot recommend working with Katie and/or following the advice published at Heal Endo highly enough. It has honestly changed my life and I will be practicing her approach for the rest of my life. She is also a kind and fun person who is open to collaboration and helping you get the most from your own healing goals.

I hope my story can give some hope to other women out there experiencing fertility struggles. I feel like if I could go on to conceive and carry a baby to term with severe endometriosis and adenomyosis then there really is hope for other people too. Katie also has her own inspiring fertility story to tell.

You can read more about Katie’s work on her site Heal Endo or you can follow her on Instagram (@heal.endo).

I’d love to hear more about your own fertility journeys- what you feel helped and hindered the process!

With love,
Claire
xxx

Seasons greetings and happy update :)

/ Endo Lady UK / Leave a comment

Seasons greetings everyone! Hope your Christmas and new year are as restful and pain free as possible.

Apologies that I have not been able to post for a while, a lot (of truly HORRIBLE stuff) has been happening in my personal life which means I’ve had limited time for writing and a significant amount of writers block. I have lots of new articles planned for the next few weeks to please do stick with me.


I just wanted to post a quick update on her to share some happy and exciting news that I have (for once, see I’m not all doom and gloom)… In April I’m going to be having a baby boy! 🙂 Currently 25 weeks pregnant. Still can’t quite believe it- having both severe endometriosis and adenomyosis, and having been trying for a few years with no success. I’d pretty much written myself off fertility wise to be honest with you.

Maybe miracles do happen. Or perhaps it’s luck. Or maybe I’m one of the people I hate who just ‘relaxed’ and then got pregnant- as if that’s a thing. Either way, I got the shock of my life after doing a quick pregnancy test having felt ‘a bit weird’ for a week in the summer.

I hope this isn’t too triggering for anyone but I just wanted to share my good news with you all as so many of your have been such huge sources of inspiration and support throughout my chronic illness journey.

Take care of yourselves, and am looking forward to posting again in the coming weeks. If you need me feel free to drop me a message into my email inbox- I know this time of year can be really difficult, and it is for me too this year, so always happy to talk.

With love,
Claire
xxx

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

/ Endo Lady UK / 4 Comments

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

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

/ Endo Lady UK / 8 Comments

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!

/ Endo Lady UK / 10 Comments

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

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

/ Endo Lady UK / 1 Comment

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!)

outward-smiles

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:

nhs-ivf
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