IVF

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

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

/ Endo Lady UK / 3 Comments

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.

fertility-podcast

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

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

Why fat is an endometriosis issue.

/ Endo Lady UK / 7 Comments

Having just given me the earth shattering news that I have severe endometriosis, just an hour after I had woken up from my laparoscopy, my surgeon finished her depressing monologue with: ‘‘Oh and if you want a baby in the future, you are really going to need to loose some weight. Do try that won’t you? Loosing weight.” Talk about kicking a girl when she’s down! I know I’m probably being melodramatic, and that she didn’t actually say this, but at the time it felt like she shouted to the entire ward: ”Oh, by the way you have a life changing illness that’s going to shatter your self esteem and test you to your limits over the coming months, but you are a fat minger who deserves it, and you’ll also bring childlessness upon yourself because of your addition to cheesy-wotsits and pies. YOU DISGUST ME FATTY!”

This has made me angrier than almost anything that has happened to me on this crazy endometriosis journey. I was outraged at the time, but in too much pain and too embarrassed to standup for myself. I am fully aware that being a healthy weight is important for women with endometriosis- for pain management reasons and to limit the effects of oestrogen on the disease progression, and I am not arguing against that. What I do object to is the strongly judgmental overtones and also the assumption that I am constantly lounging on the sofa stuffing my face, without her knowing anything about me or my life whatsoever. This couldn’t be further from the truth. If she had bothered to ask, I would have told her that I have put on a lot of weight since my endometriosis symptoms started becoming too much for me to handle. The weight went on REALLY quickly, despite me not changing me already healthy diet and keeping to exercise the best that I could, although this was nowhere near as often as when I had been feeling well. I would also have told her that the weight gain really bothers me, and that my efforts to shift it have made little or no difference.

feet on a bathroom scale - isolated

 

I’m convinced that there may be some sort of link between endometriosis and weight that has been overlooked. I do love to have a pet theory so I can be smug when proved right years down the line. While the  articles I have read assure me that ‘there is no established link between endometriosis and weight gain’, a quick trapse through endometriosis forum posts (see here for example) shows that my story is replicated in many other women.

Even if there isn’t a direct link, as many women with endometriosis maintain a healthy size, weight is such a strong signifier of both physical and mental wellbeing that a woman experiencing difficulties in this area should act as a red flag to her healthcare professionals, who should then act to she if she is being adequately supported. After all, endometriosis can affect you in so many different ways that could lead to weight gain- for example, by making you depressed, leaving you feeling too exhausted and in too much pain to exercise, and because many of the hormonal treatments can cause weight gain as a side effect. Any advice on how to better manage and address these problems would have been (and still would be) appreciated. Instead, I got fat shamed and sent on my way. Thanks for that NHS.

For me, the implications of all of this feel so huge and overwhelming. For one thing, if I need to undertake IVF treatment in the coming years I will need to have lost around 2 stones first, as IVF is not offered to women who are obese. I am on a strict diet and exercise regimen at the moment to try and achieve my weight loss goals, and become slim again. Even though I can’t think of a more joyless task than trying to lose weight, I try to focus on the positives that weight loss will bring for me: A higher chance of conceiving, looking good in my wedding photos in a few months time, better control over my endo symptoms, and being healthier overall. What’s not to like about that? However, I will point out that doing this while in pain and experiencing chronic exhaustion is no mean feat. I’m having to be such a warrior! I will keep you posted on my progress.

If you have any thoughts about endometriosis and weight, or advice on what has or hasn’t worked for you, I’d love to hear it!

Love,

Claire