healthcare

Endometriosis and the impact of delayed diagnosis.

/ Endo Lady UK / 37 Comments

It’s now been three and a half years since my endometriosis diagnosis. A lot has happened since that momentous day- two surgeries, a mental breakdown, a new job, difficult decisions, diet experimentation, a whole new community of friends, and falling pregnant to name but a few.

I am now doing relatively well- thriving for the most part in fact. 2017 was the first time in almost two decades where I can say I had times where I felt truly happy, content, and well. I can see why it is tempting therefore, for people to think that everything is OK now and I have put the trauma of diagnostic struggles behind me. That I have risen above it and moved on. That I was tenacious and refused to let my poor health defeat me.

But the fourteen years it took for me to be correctly diagnosis still shape every aspect of my life and have affected me very deeply. I am still angry about this. And I’m angry that it still takes 7.5 years on average for women to be diagnosed with this often debilitating disease, because this is completely unacceptable in 2017 quite frankly.


So let me spell it out, for those who cannot read between the lines or see behind often forced smiles what a delayed diagnosis really means and why it matters…

-Delayed diagnosis means that I’ve been left with levels of pain, fatigue, and mental trauma which still overwhelm and consume me at times. These days, I’m better at hiding it, but this causes its own hurt.

-Delayed diagnosis meant that I became progressively more ill each year as the disease spread around my body to take hold of organs such as bowel, bladder, and diaphragm. All without explanation or it was put down to ‘stress’. I spent at least five years convinced I was dying, which had a pretty negative impact on my productivity unsurprisingly.

-Delayed diagnosis meant having to watch all of my friends graduate their PhDs successfully while I am left behind, too traumatized and exhausted to finish something I’ve worked so hard for.

-Delayed diagnosis means that I’ve had to make huge compromises with my career to be able to cope with the limited energy I have available to me each day. And to live with the knowledge that I could and should be doing more.

-Delayed diagnosis means that I suffered the pain and heartbreak of years of infertility.

-Delayed diagnosis means that I earn less money than I would have done if I were well.

-Delayed diagnosis means that I am not able to always be the wife/ daughter/ friend that I want to be, and living with the guilt of this. Sometimes I just hide away and put myself first just to survive.

-Delayed diagnosis means I lack confidence in my body and deeply distrust medical professionals.

-Delayed diagnosis means wondering ‘what if things had been different’ all the time. If my GP had listened to me as a teenager. If I wasn’t constantly misdiagnosed and fobbed off as an adult. If I didn’t spend the ages of 11 to 25 in excruciating pain. If just one person had told me that period pain like mine wasn’t normal.

-Delayed diagnosis means never having closure. Nobody will ever apologies or be held accountable for the terrible time I went through or be able to put things right. Most of the people and professionals I encountered will never even know my story, or why it matters.

And that’s just for me. More broadly, delayed diagnosis of endometriosis means all these things as well as and lost working/ educational hours, lost potential, lost relationships, and lost dreams for millions of women and girls around the world. As a society we can and should be doing better.

I appreciate that everyone’s stories are different and that my case is at the more extreme end of the spectrum. I also feel that things are moving in the right direction in terms of endometriosis awareness, treatment, and funding, and there is much cause for hope.

For many of us though this progress is too little too late, and we have to find ways of rebuilding our own lives the best that we can. This takes time and is not easy but is certainly possible. I like to think I am a living example of that. But I am not the same person as the result of my difficult diagnostic journey, and I feel it is important to tell this part of my story to highlight exactly why diagnostic delay in endometriosis is a cause for concern and it addressing this really matters.

I’m interested to know how long it took you to be diagnosed with endometriosis, and how your diagnosis came about? What impact has the delay had on your life and wellbeing?

Take care,
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

Can you help to shape future endometriosis research?

/ Endo Lady UK / 3 Comments

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’m currently featuring on ‘The Endo Twins’ website.

/ Endo Lady UK / Leave a comment

Last week, I had the awesome experience of being interviewed by Fela of The Endo Twins site about all things endometriosis, adenomyosis, and living well despite chronic illness. This encounter stemmed from our shared experience of living with endometriosis on the diaphragm. You can check the interview out here.

interview-pic
If you have, or suspect that you have diaphragmatic/thoracic endometriosis- please feel free to get in touch through my ‘contact’ page. Also, do check out ‘The Endo Twins’ site as it’s such an interesting read. Thanks again to Fela for featuring me!

With love,
Claire
xxx

Recovering from a laparoscopy for endometriosis.

/ Endo Lady UK / 9 Comments

Two weeks ago today I had my laparoscopy at UCLH. The surgery lasted for three hours, during which endometriosis was removed from my ovaries, diaphragm, bowel, pouch of douglas, and peritoneum. In addition, my uterosacral ligaments were removed and my ovaries were unstuck from my uterus and peritoneum, and  a large number of adhesions were. Overall this is a positive result, and no unexpected complications occurred for which I was at high risk- such as needing a colostomy bag and/or a second surgery to address my more complex areas of endometriosis. In all honesty the most difficult aspect of my admission was being last on the surgical list and having to wait around all day starving and dehydrating my butt off.

My bowel prep the day before was a whole other story though. I wasn’t that stressed about it beforehand, having undertaken one before when I had a colonoscopy. However, my body does love to troll me, so I spent the entire day before my surgery unexpectedly ‘firing from both ends’ (TMI I know- sorry) in my London hotel bathroom while my parents and husband awkwardly pretended not too hear in the bedroom next door. I don’t know what that was about as I was fine the last time I took one. The hilarious/ironic/awful thing was that the bowel prep didn’t even manage to complete itself as I was still going to the loo constantly throughout the next morning, so I ended up having to have an enema too. Life is so cruel!

Since having my surgery I have been approached by a number of people on endometriosis forums asking me to comment on the quality of care I received at UCLH, which is registered as a BGSE specialist centre, but seems to have a somewhat mixed reputation within the endo community. I have decided to write a more detailed post about this at a later point, once I have had my post surgery follow up with my surgeon, so do keep a lookout for that. For now I will say that overall I was pleased with my care throughout my admission and was impressed by how knowledgeable and compassionate my surgical team and nurses were.

I was well enough to do yet another TERRIBLE post-op selfie. Somebody needs to remove my phone when I'm under the influence of morphine.

I was well enough to do yet another TERRIBLE post-op selfie. Somebody needs to remove my phone when I’m under the influence of morphine.

I’m now recovering at home with the support of my husband and parents. Recovery is a tricky business isn’t it? Nobody ever prepares you for that. It is a given that you are going to be anxious when preparing for surgery, and people respond to this with understandable sympathy, but afterwards it seems like everyone expects you to be ‘fixed’, happy, and to just get on with life again.

I have been feeling slightly on edge because I am so desperate for this surgery to have worked to have some quality of life again. It’s weird because I think with most operations you know very quickly afterwards whether it has been a ‘success’ or not, whereas with endometriosis being a cyclical in nature it’s much more of a waiting game to find out whether the surgery has reduced or eliminated your symptoms. I don’t like waiting games, I am fed up with them now. Mr B and I also want to try for a baby soon, so I am beginning to secretly stress about that too. I’m really scared about whether I will be able to. I’ve never walked down infertility road but it looks a scary place to be from what I’ve read and the people I have talked to who have been there.

Being off work gives you a lot more time to think about these things. Too much time perhaps.I’ve been feeling quite flat, like I don’t know what to do with myself now. It’s like a big anti-climax as you spent so much time and energy focusing on and preparing for the surgery and then suddenly it’s all over.

On this plus side, I think I’ve been recovering really well. My scars are teeny tiny and healing well, I’m in little to no pain, and my family and friends have rallied around me this time so I am feeling really supported. I’ve never been good at relaxing and putting myself first, so that’s what I am going to work on over the coming weeks I think. I am also going to take up yoga when I’m well enough again to get this body as healthy and strong as it can be. Things ARE going to be better from now on I can feel it…they have to be.

I’m happy to answer any specific questions about surgery, bowel prep, or UCLH if you have any, or to hear about your ideas and tips for post-surgical coping and recovery.

Love,

Claire

Choosing surgery: Shooting for success, surrendering to sacrifice.

/ Endo Lady UK / 2 Comments

I am now booked in to have my excision surgery at the end of August at UCLH. The plan is to remove as much as my endometriosis as possible (from my bowel, diaphragm, peritoneum, pouch of douglas, and ovaries), drain my endometrioma, and unstick my uterus and ovary from my abdomen wall. Regular readers of this blog will know that this surgery has been very hard fought for, so I really hope that it is a success and that it enhances my quality of life.

Somewhere between my pre-op appointments and signing doom-filled consent forms, I started to think about just how much pain, sacrifice and trauma we women with endometriosis have to go through for the mere possibility of feeling any better. It seems so unfair and is little understood by those around us. I mean, until we became chronically ill we were used to the following equations when it comes to illness right?:

illness + medication= cured

illness+time= cured

illness+surgery=cured

But this is so different when you have endometriosis, because there is no cure and no appealing treatment options. And, at times I feared, no happily ever after. But I REALLY want happily ever after, so following much thought I decided that I am willing to take risks and fight for that ending. But making these decisions (i.e. to have surgery or a new hormone treatment) it isn’t easy and the path is riddled with more danger, pain, and uncertainty than I feel is really fair to ask of us.

recovery

My experience with a chronic illness.

For me, having major surgery means accepting the following things, which seem really overwhelming and scary:

In order to get better, I have to accept that things will be much worse first.

I’ve had one laparoscopy before, but that was a minor procedure whereas this surgery is classified as a major one because of the amount of work being done internally. As a result I face a greater amount of pain and a longer recovery period, before I can start reaping any benefits to my life. I’m also not great at sitting about and resting, so I imagine I will spend my sick leave worrying myself half to death. So that’ll be fun. After my surgery I’m going to have a Zoladex injection too which I’ve heard mixed reviews about.

I am going to have to take a four month break from my PhD. I will not be paid during this time.

While work have generally been supportive, I do think that having yet another break from my PhD does me no favors career wise. This is so frustrating when I have always worked so hard and have big aspirations. I have also been financially independent my whole adult life, so suddenly having to choose between having surgery and having money has been such a difficult decision to make. This decision was make harder by the fact that…

I will be physically, emotionally, and financially reliant on my husband and parents during my recovery.

Guilt doesn’t even begin to describe how this makes me feel. I can (just about) cope with endometriosis negatively impacting upon my life, but I have always tried to shelter the people I love from its grasp. I hate the idea of having to rely on my husband for money, to ask when I need things. And I hate that he and my parents will be having to go without because of me.

Hopefully this will not be the case.

Hopefully this will not be the case.

I have limited control over the outcomes of my surgery.

I am going into this surgery for of hope that it will help improve my life, but I know that this is not guaranteed. With any surgery there are risks and potential complications. My former surgeon actually advised me against having any further endometriosis surgeries because of these, she said: ”The risks aren’t worth it for a disease which isn’t life threatening.’‘ She clearly has never had to live with a chronic illness. In my case the amount of bowel work that will be done means that I may end up with a temporary colostomy bag :S I don’t look forward to this and am hoping and praying that it won’t happen, but sadly it is not an outcome I can control.

I have limited ability to plan for my future, both in the short and long term.

While all this is going on, it’s just impossible to make plans. Not that stops people asking: ”When will you be back at work? When will you finish your PhD? When are you getting a job? When do you want to move house? When shall we have a baby?” I just don’t know right now, and I find that hard as I’ve always been a natural planner who is sure of their next step.

I don’t want to face any of these things, but I will do anything to try and feel better. I know my life can be so much more than it is right now, and I know that I can be brave and get through this somehow. It makes me so angry that I and all you other wonderful women have to go through these repeated surgeries and hormone treatments in the hope of some relief. I don’t think healthcare professionals or employers understand the massive impact that these things have on our personal and emotional lives. But all we can do is have hope, and be brave, and keep believing that things can be better for us.

I’d love to hear your thoughts about any sacrifices you’ve made to have treatments for your endometriosis or chronic illness. Or how you get through the difficult times pre/post surgery.

Love.
Claire
xxx

I FINALLY had my specialist endometriosis appointment at UCLH. It did go to plan (well, sort of)!

/ Endo Lady UK / 10 Comments

It took ten months of pleading, tears, tantrums, and epic disasters, but on Thursday I FINALLY had my specialist endometriosis appointment at UCLH. I knew I was booked in to see the specialist endometriosis nurse and a consultant, leaving me feeling equally excited that I was going to be making some progress at last and terrified about what treatment plan would be devised for me.

Through the trauma of gaining my diagnosis and fighting for the specialist care I knew that I needed, I never gave up (even when I really really wanted to) because I truly believe I can feel so much better than this. I just want to get my life back, at least as much as I can, and start working towards all the things I’ve been dreaming about: a satisfying and challenging career, buying a home with my partner (lets call him Mr B :-)), having kids etc.

Mr B and I arrived at UCLH in good time, and within 10 minutes I was called in to see the endometriosis specialist nurse. It was actually so lovely to talk through my history with somebody who is empathetic and knowledgeable about the condition, and she explained that with my endometriosis in the state that it is currently that surgery is likely to be the recommended option for me. So far, so good. She then asked if I was to see the consultant today and I replied that I was and showed her my confirmation of appointment. A quick look on her computer however showed that, actually, I had NOT been booked in for an appointment with the consultant.

First *face palm* of the day.

First *face palm* of the day.

Words literally failed me. I think it’s a marker of how many health system disasters I have had in regards to my endometriosis that I didn’t cry or even get angry. To just be there for ten minutes to discuss my patient history was not what I had in mind- I need a little less conversation and a little more action now. I stood firm and insisted that a doctor met with me today- despite her protestations that I would be unlikely to be seen today as all the consultants were ”over-booked”. These aren’t my errors but I am constantly having to pay the huge physical and emotional price with no apology provided. In the end she agreed to speak with the consultants at the end of the clinic to see if they could squeeze me in, and then I was sent off to the waiting area to sit and stew while they made a decision. Mr B’s face was literally hilarious when I told him about the mistake, he just couldn’t believe what was happening.

After a mildly traumatising hour long wait, the nurse returned and said that a consultant had agreed to see my at 3.30pm. Annoyingly, this left me feeling pathetically grateful- like they had done me a favor, rather than having just sorted out their mistake. This little break gave Mr B and I the chance to head into London for some shopping and to stuff our faces with Japanese food and gelato. So there were some silver linings to the day. 🙂

Upon our return to UCLH I was able to see the consultant after a mere two hour wait. Fortunately, they have a TV in the waiting room to help pass the time. Unfortunately, they were showing Deal Or No Deal. But hey, beggars can’t be choosers right?! The consultant was a fairly friendly chap, and he reviewed my ”confusing” patient history (his words, not mine) and then went through all of my questions with me. I was a bit disappointed if I’m honest that he hadn’t been able to look through my history or consider my case beforehand. He opened with ”your main problem is pelvic pain and pain on intercourse yes?” NO! And then followed with ”and you haven’t been diagnosed with endometriosis through surgery no?” YES-I HAVE!

Second *face palm* of the day.

Second *face palm* of the day.

After some minor corrections and discussion he laid out my options (do nothing, hormones, surgery), and we both agreed that surgery is the way forward to me. So I am now on the (four month) waiting list for a nice bit excision surgery. Progress! Hallelujah! They are going to get what they can and take my endometrioma on my right ovary, but said that while they will attempt to deal with my diaphragm and bowel problems, that this may require a second surgery depending on what they find. He also said that they would be able to give me more detailed and specific fertility advice after the surgery had taken place.

So after a slightly chaotic and underwhelming experience that’s where I am now- waiting again, but this time it is a positive wait for action. I’m so happy that I am on the surgery list-I wanted that resolved before my wedding in two weeks time so I am not just worrying about my lack of progress. It gives me some time to think about and process things, and plan out the next year if my life a bit before the surgery. With my luck they will probably end up doing the wrong surgery and amputating my leg or something! I was also so glad Mr B was with me, I don’t think I could have coped with the mishaps if I was on my own. He is great company in a crisis, he has the calm head that I lack.

Have any of you had excision surgery for your endometriosis? If so, did it help to reduce your symptoms? Your thoughts, experience, and advice on this would be much appreciated.

Love,
Claire
xxx

I FINALLY had my hospital appointment. It didn’t go to plan.

/ Endo Lady UK / 8 Comments

As I have mentioned in previous posts, I have been waiting for quite a few months for my appointment at an endometriosis specialist center in London.  I’ve been pinning so much hope onto this appointment, and it’s the only thing been pulling me through the last few months, thinking I would finally get some help and support.  My family were even more excited for the appointment than me, as they are just desperate for me to start getting better or for some progress to be made in my care and treatment. The appointment was this Monday, but of course, this is ‘The Endo Lady Show’ and so it didn’t go to plan. WHY DO NONE OF MY PLANS GO TO PLAN? Let me tell you what happened…it’s quite a long and complicated story so please do stick with me.

Even arranging the appointment itself was no mean feat, as my GP wasn’t keen on the idea. She didn’t think it was necessary as she said ”endometriosis isn’t a big deal.” Anyway, she did eventually agree to the referral (after much begging), and I received an appointment through the post quite a few weeks later, on Christmas eve. Unfortunately, it was clearly for the wrong department (diagnostic gynecology), so I cancelled it and called my GP’s booking department to point out the error. I gave them the exact details they needed to make my appointment through NHS choose and book, and a couple of weeks later I received a letter from my GP practice saying the appointment had been made and listing the time, date, and clinic number. This whole process took around 4 months, which is quite a long time I think. Still, I was booked in, and apart from another long wait of 15 weeks all was well I thought.

My partner and I arrived at UCLH with plenty of time to spare and made our way to the clinic number I’d been given. I signed in and was asked to complete a short medical questionnaire, which I did no problem. Two hours later we were still sat in the waiting room and I hadn’t been seen. I thought this was pretty weird so I went to check up on what was happening with the receptionist. Turns out they’d forgotten me- can you believe that?! So that wasn’t a good start. I get really anxious in hospital waiting rooms so I was feeling really agitated and exhausted by this point. The administrative staff were totally panic stricken about it though in a slightly hilarious way, and one receptionist actually chased a consultant down the corridor to tell them I was still here.

Around 30 minutes later a registrar came to collect me and led me down the hallway to her office. The first thing she told me was that this was not the specialist center and that I had been referred to the wrong place. She said they had realised as soon as they received my referral that it was for the wrong department. Time stood completely still for a moment and I felt sick to my stomach, but somehow I managed to hold my shit together, smile, and continue with the appointment without going elaborately insane. She told me she would happily refer me to the right place and that this would require an in-depth health interview and a trans-vaginal ultrasound which we could do there-and-then. I had written down a list of all my symptoms to take with me, and I made sure she noted them all down in my questionnaire responses.

I’d never had a trans-vaginal ultrasound before, and I can’t say it was a pleasant experience. I actually threw up when she was pushing on my ovaries because the pain was so bad. So that was pretty awkward. On a positive note, the doctor was able to map the current state of my endometriosis pretty clearly, so I am now much more up-to-date on where things currently stand. Sadly she said that the endometrioma on my right ovary that I had removed in August is growing again with a vengeance, and that I now also have a cyst on my left fallopian tube. Since my surgery my right ovary has also become attached to the back of my uterus and abdomen wall, explaining the increase in my pain on the right hand side. And for the cherry on top, she also said that I have adenomyosis. Lucky me! I’m not sure about the extent of this though as she didn’t go into detail.

When I was being told these things I just went totally numb inside. That seems to be my go-to response in a crisis. The registrar then left me for around 20 minutes while she went to arrange my appointment at the specialist center. When she came back she looked really sheepish, and said that the next available appointment she could make for me is in May- three months away. I hate that I did this, but I actually broke down in tears at this point. Months and months of anxiety and anticipation just caught up with me. I told her I just don’t know how I can wait that long, since I have been trying to get this referral since August. I told her about how badly the pain and fatigue is affecting my PhD and my mental wellbeing. She was super apologetic and I could see she felt bad for me. She said she can see from my notes and scan how desperately I need to be seen by the center, and she has made sure I am at the top of the waiting list for cancelled appointments.

So that’s where I am again now. Still waiting- for answers to all my questions, for help, for advice. Still in limbo. Still worrying myself half to death about all my cysts and endometriomas. By the time I have my appointment at the specialist center, I will have been waiting to see a specialist for 10 months-that can’t be OK can it?! There are loads of people in my support group who were diagnosed after I was, but who are light years ahead in their treatment in comparison to me. I’m happy for them, I’m not bitter or begrudging, but I just want the same for myself.

I’ve had several severe panic attacks since my appointment and I haven’t gone back to work yet. I’m a bit of a mess to be honest. I usually do a fairly convincing job of staying strong and positive, but I’m feeling so broken and lost right now. I just want to give up. Since being diagnosed in August I’ve had to battle so hard to make any progress at all in my care, and I’ve still basically gotten nowhere. I actually want to make some complaints I think because I’m so angry; about my GPs attitude to my care, to my first hospital (Addenbrooke’s) for giving me no followup or treatment-plan, an to UCLH for seeing my referral was to the wrong department but for accepting it anyway and delaying my correct referral by several months (I can just about forgive them forgetting my existance as I sat in their waiting room!).

I’d really appreciate hearing your thoughts and feedback about this. Am I right to feel upset, or am I just being melodramatic? I really don’t know anymore. Do you have any advice on making constructive complaints? Also, if you have any thoughts or tips about adenomyosis please do let me know them.

Love,
Claire
xxx

The art of waiting: The best way to prepare for an appointment with an endometriosis specialist.

/ Endo Lady UK / 8 Comments

Having endometriosis seems to be an excellent lesson in developing patience. A lot of waiting around seems to be involved with this disease: waiting for medical appointments, waiting to see if a new treatment regime works, waiting to see whether you can have a baby, waiting for adjustments to be put in place at work, etc.

I’m still not very skilled in the patience department, waiting is not my forte. It;s makes me jittery and anxious. I don’t think I’ve ever heard to three bleeps of the microwave that tells you it has finished. What can I say, I’m a do-er.

The lack of progress in taking control of and managing my disease was really getting to me for a while, but since the new year I have tried to fill the void by being slightly more proactive. It took much foot stamping and pleading, but I finally have an appointment booked in BSGE accredited endometriosis centre at the beginning of March, so that is some progress at least. I’m really excited to finally discuss my situation with an endometriosis expert.

The waiting time involved in this has got me thinking about the best way to prepare for such appointments. For some reason, despite being intimately acquainted with the effects of endometriosis on my body, all this information just seems to evaporated out of my head the moment I enter a doctor’s office, and I never really do justice to how unwell I have been. Maybe it’s some weird British stiff upper lip thing. To address this, one thing I have started doing since the new year is keeping a pain and symptoms diary, using the ‘my pain diary app’ for iphones. I thought it might be useful to show my consultant something ‘concrete’ about how the disease affects my life, since my saying ”I am in agony and exhausted most of the time” doesn’t seem to have penetrated the psyches of most doctors I have visited before. I’m quite interested to see whether this approach impacts upon the quality and outcome of my appointment. I will keep you all posted on that!

My Pain Diary tracks the symptoms of my endometriosis and their intensity.

My Pain Diary tracks the symptoms of my endometriosis and their intensity.

I also made this diagram to show precisely where I experience endometriosis pain, and I am hoping this might be useful in ensuring that each of these areas are addressed in some way by the end of my consultation. My shoulder pain, thanks to the endometriosis on my diaphragm, is particularly debilitating, but so far I haven’t found anything to help with this.

Where I experience endometriosis pain.

Where I experience endometriosis pain.

I’ve also contemplated keeping a food diary as well, but I think that might be overkill at the moment. I sometimes feel that somebody should be paying me to do this stuff, the amount of time I put into it. 😀

So, I would like to know, how do your prepare for meetings with your endometriosis specialist? Do you use any technologies to do this, and do they help? Tips and advice in this area greatly received. Also, I’d like to hear your thought on coping with the waiting and uncertainty that comes with endometriosis. 

Love,
Claire
xxx