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.
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!