Deep infiltrating Endo/post surgery/HRT

[SophieA]

Hi ladies, I'm at a bit of a loss and so thought I'd message on here.

I had a hysterectomy 4 months ago leaving just one very damaged ovary. I had stage 4 endo which was really extensive and I had a fibroid the size of a melon, the Endo had gone to bowels, and ureters and was told I needed surgery quickly otherwise I could end up with kidney failure. I ended up going through a a private consultant as I got my MRI results from NHS 9 months after I had the test and results were bad then so I had a feeling things had gotten worse and I needed to act quickly and got no where with NHS (I was referred in Nov 22 and had to beg for an MRI and was told I'd be lucky, and was seen by a general gynaecologist not an Endo specialist).

I had been doing well with recovery the first couple of months, but then started really struggling with severe anxiety and tearfulness which came on suddenly, night sweats, fatigue and brain fog. I started to feel depressed wondered if it was doubt about surgery and grief of not having had children but then oestrogen levels for tested and were very low.

I've started on HRT for about 3 weeks now but I'm on 25mg patch with progesterone as I get hormone related migraines. I'm not 100% sure if it's related to the progesterone but my pain has come back and all feels similar to pre surgery. When I had Progesterone only pill before my first surgery, it seemed to make the pain worse so I stopped it.

My appointment with NHS was cancelled last week (it is the same consultant I saw privately) and I'm just feeling stuck as what to do it is now in September (it was supposed to be sept last year originally).

Sorry it's lengthy I guess I wanted to hear if anyone has had similar experiences so soon post surgery/ with finding the right dosage with hrt I'm especially concerned about the best thing to do with HRT balancing the risk of Endo coming back with risks of early menopause. Thank you for anyone who has read all this and any responses!

[Sunset-lady]

This will be me in a few weeks as I'm having a similar operation to you. I'm on HRT now and zoladex. If I was you I'd switch from patches to estrogen gel and utrogestan which is natural progesterone. If I take progestin I become anxious and paranoid but utrogestan is great. I'd then see how you feel on different doses of the estrogen pump. The gel gives you more flexibility than the patches. We need to be careful as we know estrogen drives endometriosis so whatever estrogen we have needs to be balanced with progesterone. Unopposed estrogen will lead to endometriosis regrowth and don't forget that endometriosis has the ability to make its own estrogen anyway. You might want to see a menopause expert- my experience of the surgeons is that they know VERY little about HRT. You may also need some testosterone which we tend to forget all about but it's often the final piece of the jigsaw for women in surgical menopause xx

[SophieA in reply to Sunset-lady]

Thank you for your insights! Yes it's a tricky balance between managing risks of menopause with risks of endo returning. I was hoping to see a specialist in menopause and endo through NHS but I imagine it is a long wait. It's good to know there are different options and I guess it'll be a while of trial and error. Good luck with your hysterectomy, hope it goes well and you have a smooth recovery. Xx

[PopcornPJ]

I have had a hysterectomy (including ovaries and tubes) a week ago because of a previously diagnosed borderline tumour. I was started on 50mcg estrogen patches (evorel) and a progesterone pill (utrogestan). It’s early days of course for me. My surgeon (gynae-oncology) was very keen and clear though about me taking both hormones post hysterectomy to ensure we keep the endo at bay. No hormones was never a discussion (I’m 40)

I Hope you get to see someone soon, and at that the right person. Going round the merry go round of gynaecologists is time consuming and confusing.

[SophieA in reply to PopcornPJ]

Thank you hope your recovery is going okay and you can take things easy while you recover... It takes time! Hope that you get on okay with the HRT- keep me posted!I had hoped to keep both ovaries but the one was too damaged. My consultant seemed to think the one ovary would just do the work of both but that definitely doesn't seem the case and I'm 40 too so it seemed a little optimistic.

I guess they cant be specialists in everything but yeah it is a bit exhausting trying to get clear guidance you feel you can trust.

[Pilipau]

Hi Sophie, similar story here, I found that infiltrating endo like ours has receptors for natural progesterone and it makes endo flare up. After they removed my two healthy ovaries, I have been on tibolone, it helps with surgical menopause and it keeps my bowel and apendix endo from getting activated. I was 41 at my surgery and now I am 44.

[SophieA in reply to Pilipau]

Thanks for your reply, I'll do some research and ask about tibolone. I hope that it has helped you? It is an extra level of complication to hysterectomy/perimenopause which I was a bit naive to and wished I'd learned more about prior.

[Pilipau in reply to SophieA]

Same here, I wished I'd learned more about surgical menopause prior to choose taking my ovaries out. Tibolone has helped and also after almost 3 years the body adapts. Energy is lower and many things won't ever be the same for me, but endo pain was worse than this.

[SophieA in reply to Pilipau]

I'm glad you've found something that works for you after some time. There is so much to learn and I do wish surgeons spent more time talking about all these things to help make better informed decisions. I was given now information when I bought a new sofa than the information I got pre surgery! Though I did a lot of my own research, it was overwhelming.

[Sunset-lady in reply to Pilipau]

Hi, I've never come across this - can you say where you read it? I know we react to estrogen and many of us react to progestin (although some women even with endo seem able to tolerate this which is why the coil works for them) but I've never come across anything bad about natural progesterone (utrogestan). Usually this calms endo and balances everything which is why we need it so much even post hysterectomy. Thanks very much.

[Marcia71]

As said it can be a tricky balance with HRT and endo but what you're describing through anxiety and mood swings and hot flushes and even migraines all sounds like HRT isn't in right balance. HRT must be combined and continunous for endo sufferers. and even then it can reactivate endo if it wasn't all fully removed at your hysterectomy. If you don't already I'd get all your notes from the hyster to be sure it has all been taken away. There are plenty of Menopause clinics on the NHS and they would be your best bet - I appreciate the wait may be long - there are private menopause clinics too. I had a hysterectomy due to adenomyosis and endo 10 years ago now but it was done by a general gynae so I had 3 more ops to clear out endo by a bsge team. HRT continues to be a challenge but my GP surgery does have a menopause knowledgeable GP and most are meant to apparently so worth an ask at your practice. From what you describe I think you need more oestrogen - and that would mean a bit more progesterone to ensure it isn't unopposed and more likely to drive endo. Drop me a direct message if consultants in London are any use to you as I can give you a couple of names.

[SophieA in reply to Marcia71]

Thanks Marcia. Yeah, I have found some relief with some symptoms but definitely think I need to increase the hrt. I'm lucky that I have a really good GP who has done further training in menopause but I'm guessing this may be a little more specialist and my surgery doesn't prescribe testosterone which I know some do and it's potentially helpful too.Sorry that you had do many operations and that hrt is still a challenge.

I've also noticed an increase in my pain and bad fatigue since being in the HRT, but it's hard to tell if it is due to the HRT or not having enough. I find it tricky as well not having a period to be able to concretely say where I am in my cycle (I would never have thought that I'd miss any element of having a period!) what have you found challenging with the HRT?

[Marcia71 in reply to SophieA]

I hope your gp can help. Some do prescribe testosterone but I did need a menopause clinic to prescribe. Was all nhs. Since seen private menopause specialist too and they tried testosterone but I didn’t find any benefit.

A series of blood tests can tell you when your cycle is but most places don’t rely on blood tests so can be tricky to get.

The biggest challenge I’ve found is right dose and it keeps changing. I tried patches first and was allergic to the glue so didn’t absorb. Couldn’t find a tablet that worked. Then gel and was rather messy but utrogestan suited me. So tried spray next and whilst that is very easy to use I found dose very variable and many sprays stopped working before I’d used all doses. The variability gave me migraines. Then back to gel and I split the dose so one pump morning and one evening as dries quicker.

Recently had new symptoms of vaginal atrophy - very uncomfortable and also constant thrush. So vaginal oestrogen added. And first off tried pessaries and didn’t seem to work so now on cream.

Just all the changes is wearing and challenging at times to manage symptoms and work full time and do all the other things I want to.

Hope it’s all a bit easier for you.

[SophieA in reply to Marcia71]

Thank you for sharing your experiences. It definitely sounds like a lot of trial and error and as you say, that is all wearing and it sometimes can feel a lot of work to educate and advocate for yourself. I'm trying diet, exercise etc too but I think it all takes time to make them a meaningful positive change rather than an added stress! Maybe some day in the future they will have more advanced options to help get hormonal dosages adjusted 🙏Hope you have some ease with the challenge of balancing symptoms and work life balance too x