Please can anyone help- endometriosis and GnRH?

[Myboyamelie]

Hi - apologies in advance - this might be long!

I was diagnosed with endo earlier this year - mild / stage two. I’m 36 and have two kids.

I had a diagnostic laparoscopy in February where the endo deposits and a cyst were removed. Endo was treated via excision and ablation.

My pain didn’t subside so I saw my consultant again who prescribed a gnrh (decapeptyl) to induce a medical menopause along with some HRT.

He told me it would make me feel better and didn’t mention the flare up which commonly happens in the early weeks. I was pretty unlucky - mine was a nightmare with out of control heavy bleeding. I was away from home with work too which made it an even worse experience.

I was pretty disappointed in my consultant as he’d really made out this drug to be the wonder cure all. I felt a bit misled about it all so sought a second opinion. The second dr encouraged me to continue with the drug and I did. I started to feel better and things were going well. I was able to reduce my pain relief and for about two weeks felt like me again. The dr told me I could stay on this until I’m 50(!!) or have a hysterectomy.

Then I started bleeding - not heavily but I’d say a light period. The pain returned and two weeks on I’m still struggling.

Alongside this I have some annoying joint aches, headaches and definite brain fog.

I saw the second dr earlier this week. He clearly thought I would dance into his surgery telling him I was fine and was taken aback to be told otherwise.

He didn’t have a solution except to say that he thought I should continue with the drug which was not helping pain and some other annoying side effects.

The consultation became a bit strained as he seemed to have no idea what to do.
I left quite upset and spoke to the complaint manager who turned out to be a fello endo sufferer.

He told me a few things that I think are bullshit - that my age and fact I have kids mean I don’t fit the typical profile of an endo sufferer.

He has now written a letter to my GP, cc’ing me which is no help at all. It says I could maybe change my decapeptyl to prostrap. And maybe I could change my HRT. And that really it’s all up to me and he has no recommendation.

I’m gutted. He hasn’t asked to see me again so I feel like I’m left with no choices, no support and that I should theoretically change my treatment and then have no follow up.

I’m being treated privately but I can’t imagine that my healthcare will pay for a third opinion. I wasn’t difficult or unreasonable in my consultation but just feel I’ve been totally cut loose and left to make these decisions myself. He had previously said he’d do a hysterectomy but is now reluctant because I haven’t reacted well to the drug, so perhaps it means the hysterectomy wouldn’t cure my pain.

Does anyone have any idea what I could do? Has anyone had any experience of this? Feeling pretty desperate and alone. ☹️

That's tough. It may not be easy, but I think you really need to ask for another appointment with one of the consultants, or at least a phone call, so you aren't feeling so overwhelmed and unsure of your options, and be persistent. Are either of the gynaecologists you have seen endometriosis specialists? Are they associated with a BSGE centre? The comment about you not fitting the profile does seem off.

I know it doesn't sound like you've had a very good experience, but unfortunately there are only so many treatment options for endo and what works for one person doesn't work for another. The consultant can't decide what level of pain or side effects you can or can't live with, and they also can't know for sure whether more surgery would help the pain. It sucks. Personally I've heard too many stories of women who had hysterectomies and were still in pain afterwards to be keen to go down that route straight away, but that's me.

I've just had my 4th prostap jab and I am really seeing a big difference now, but the first 3 months weren't like a switch had been flipped. And if you only had excision in February, it could take months to heal completely from that. The first period or two after excision are often legendary in terms of heavy bleeding regardless of the decapeptyl and HRT combo. But the pain being back now is the issue . . .

Hi - thanks for your reply. The first consultant also works at a BSGE centre.

I was clear with both consultants that I need to understand the short, medium and long term pain wise. In fact, I started my consultation on Wednesday by explaining my symptoms and saying that I needed his help to confirm whether this was as good as it gets. If so, i explained I would need to make some decisions around my career as I have a demanding job which requires weekly U.K. travel and lots of extra hours as a result. I simply can’t do that job to the right standard with this level of pain. So to answer that point, he should have understood that the status quo isn’t working. I may be horribly naive but surely there are more avenues to try before someone has to leave their job?

I’m glad the prostap is working for you - fingers crossed it continues.

I opted for a hysterectomy (I had fibroids and adenomyosis which were adding to the pain) but my consultant advised the only way to stop the endo coming back would be to have my ovaries out - as it happened, my ovaries were too badly damaged by the endo to keep anyway. Otherwise, as you are still having a monthly cycle, the endo will continue to be stimulated by your hormones.

It worked for me, but it does thrust you straight into full menopause, and there are long-term health implications from a premature menopause, which, as you are only 36, you would need to consider carefully.

Are you confident that all the endo was removed during the excision? Have you been checked for fibroids/adenomysis - if the pain is worse during your period, it could point to something in your womb?

@Myboyamelie Thanks for your reply. I see your dilemma. What about paying for a third opinion out of pocket, since the stakes are high? It would probably only be a couple of hundred pounds just for a consultation and if it helps you to make the decision, or if they would support you in going for a hysterectomy, it would probably be worth it.

The options appear to be try prostap, try changing your HRT, or try a hysterectomy. No one can say if any will help with any certainty, but equally I don't think they can say, yes, this is as good as it gets, just cope with it, either. And there could be other options. Keeping your job is a good goal in itself.

And sorry, I meant to say as well, fingers crossed that you get some good advice! x