My Story . . . an update; progress, endo recurrence and the future

[luthien]

Hey all,

Thanks to those of you whom have been following my story if you've not found it, you can get to it via the below link. I'd like to think it'll help any and all of you on your endo journey, whether at the start, part way through, worried about what to do next, or simply just wanting to see if your story is similar.

healthunlocked.com/endometr...

I'm just adding an update. Following on from the above post, it's now been three years since my last excision surgery. About October 2020 I started to get some little niggling symptoms that made me think my endo had come back; I had the return of deep pain during sex, my periods had become longer and heavier, the one day period cramping was now two days, I had the odd spotting throughout my cycle, my ovulation days were shifting around a bit, sometimes with low LH tests. So I thought "oh no, time to get back to see a specialist". I have medical insurance through my hubby's work (he has to pay for me) so like last time I skipped my GP and made an appointment with a private specialist - unfortunately a different one as mine signed off on long term sick leave.

I had the specialist consultation in November 2020, we discussed my reasons for wanting a laparoscopy, which included needing to find out what's causing the pain, remove it if possible, check my ovaries, do a tube dye test, and a hysteroscopy with biopsies. We want to start looking at IVF options; we've been "trying" for about 10 years, I say trying meaning we're not focussed on it all the time, but just going with the mood and tracking my ovulation, if we miss it that month, that's fine. So we'll explore those options when everything is okay. He suggested the lap means I'll be in my best health for family planning, so perhaps follow that for two years then see where I am and what we feel if all options have failed - this means whether I want a chemical menopause or a hysterectomy as I may feel differently by then; the endo will come back.

I had my laparoscopy in January 2021, my specialist said he was surprised the endo had come back so soon (3 years after excised completely by his endo colleague) but he did say it can happen, he's graded it as a stage 3 (stage 4 three years ago). He has excised all the endo he can find from my whole abdominal area, it was extensive on my right side, my ovaries were stuck (again) to my abdominal wall as were my ureters (again). Tube dye tests were fine, I had a endometrial ovarian cyst which he drained and removed, both ovaries intact. No problems in my uterus.

Recovery from this one has been more of an emotional battle due to lockdown, but two weeks on I'm back to work and working from home which I feel will help recovery; no sitting at a desk for the whole day and I can wear what feels comfortable!

I'll have my post op follow up in about two weeks time. Any questions I should ask relating to family planning?

We have an initial appointment booked with an IVF specialist consultant (also an endo specialist - whom I could have chosen) in a few weeks time - I'll take my specialist notes with me and any letters. Is there anything we should be asking during this? My hubby will be having a separate sperm tests (done under the NHS as it's the same processing).

We are hopeful for the future, but are also prepared for the downsides; time isn't on my side, I am 36. We now know my endo can return and is most likely to in about 2 to 3 years, so my specialist is very reasonable to place a 2 year limit on family planning, all the stresses of this and the additional hormones will undoubtedly cause my endo to come back quicker. There are other options, and we are both healthy, that's all that matters, we have always said my health comes first (his as well of course), so if I need more surgery . . . . or whatever I choose in a few years time we'll go through that together.

We're staying positive during this time, both with what's going on around the world and our personal situation. I wanted to reach out to all my endo sisters - we are in this together whatever stage of our lives, our plans, or our endo journey we are on.

Any help / advice / support appreciated. Happy to answer any questions, anything at all!

I hope this helps others too x