HRT, severe endometriosis, failed ablation. What heck to do?!

[Livelovelaughfuckoff]

Diagnosed with severe endometriosis last year (bowel and pelvic organs are now all adhered to each other and waiting for an op to deal with that but could be at least another year or so).
Been on HRT 3 years (prior to knowing I had endometriosis but looking back symptoms have ramped up since starting). Had an ablation a three months ago but has failed. Still having heavy bleeding and pain as bad if not worse.

I take progesterone tablets (200mg) daily (no break) and oestrogen patch is 75 micrograms. I’m bloated, have gained loads of weight in the last year and frankly probably feel as low as I ever have. Looking back when they upped my dose last year I suspect the fatigue and low mood were more a symptom of the Endo rather than peri

Going to see GP this week to discuss the HRT. Given that I don’t seem to feel any better on it these days and the severity of my endometriosis is it worth significantly reducing the oestrogen? Should I go for a coil rather than tablets to help with the bleeding?

I’m going to ask the consultant about having a hysterectomy but won’t be seeing him until September so it’s a long wait. My body feels completely broken and I don’t have much faith in the GP knowing what will be best.

Anyone had similar? I want to at least have some idea about what I want to ask for when I see the GP this week.

Would recommend trying a mirena, plus seeing if you can reduce your oestrogen dose without being too symptomatic. Have you tried any further treatments for endo eg zoladex from gynae? Might be worth a try before considering a hysterectomy. Some people have benefit from tibolone instead of standard hrt

Thanks for your reply. No further treatments yet for the endometriosis as it was only a few months ago and at the time the consultant seemed fairly confident that it was successful (bar all the bowel stuff that needs a further op). I will ask the GP if she can write to the consultant given my next appointment is so far away.

I’m guessing I should have had the coil out in when I had the ablation as it was mentioned but I turned it down. To be honest I half thought they were going to say they didn’t find endometriosis just polyps so it was a real shock after to know it was so bad. I tend to get more low level chronic pain never the debilitating stuff that floors some people so assumed mine wasn’t that bad.

Tricky. You’re going to be bloated anyway from the endo, I would swell like a balloon
I had excision for stage 4, bowel and bladder involved if you have any questions! I’m on HRT but 1 pump of gel and progesterone daily plus a mirena which was what the gynae advised

interesting didn’t realise mirena and progesterone together would be an option. Yes the bloating is probably the endo as much as anything.

What was the recovery like for you? Obviously had the ablation and that wasn’t too awful but no real idea what the next surgery involving bowel and bladder is going to be like in terms of recovery time? How is your situation now if you don’t mind me asking?

Apparently a great recovery! Surgery was 8.5hrs, finished at 6pm. I had a bowel surgeon and the endo surgeon and 7 incisions. 30 min obs so not much sleep overnight. I asked them to go easy on my bladder as I didn’t want a catheter for a couple of weeks. First wee was painful and tricky as they had to watch me do it

Gynae sent a helpful letter basically telling my GP what to prescribe for when I needed HRT - oestrogen fuels endo so that’s why the double up on progesterone

i was up finding coffee at 8am the next day and discharged by midday. Standing up/sitting down was sore on my core for a few days. Back at work after 3 weeks, fatigue was the main thing I guess from the GA
recommend a long phone charger, some good box sets and easy to grab food/snacks plus an insulated mug for hot or cold drinks

Pain has 99% gone and no periods due to the mirena. For context I was on morphine previously and had numerous a&e attendances where I needed gas and air to just get off the floor

Wow 8.5 hours surgery! That’s mind blowing. Have been told it will be a bowel surgeon and the endo surgeon so guessing similar op. 3 weeks recovery sounds pretty amazing for what sounds like major surgery. It’s wonderful that it’s been a success for you. Gives me some hope!

No way I’m going to be able to pee with anyone watching honestly my bladder just shuts down at any hint of expectation. Should have been a day case for my ablation but couldn’t pee for 16 hours and had to stay overnight.

Yeah it was meant to be a day case, she said I was the longest and worst surgery she had in a while. My bowel was folded over, everything was stuck where it shouldn’t be. The bowel surgeon was just meant to be on standby but she said she took one look and rang him
I walked a lot, nothing much but just pottering around the house which I think helped, took vitamins, loads of fluids and slept a lot

I was diagnosed with endo in my 20s so had treatment and surgery back then. After DS was born, a bit of a miracle, I had a coil fitted which was life saving and continued with one until in my early 50s when I started with perimenopausal symptoms. My GP added 40mg oestrogen patches which didn’t agrivate the endo but did cause rapid enlargement of fibroids I didn’t know I had. These would not have been a problem but because they impinged on my sciatic nerve I was experiencing more frequent episodes of sciatica. I eventually had to stop HRT due to breast cancer.

have been taking Anastrazole for the last four years which can be used to treat endo since it’s a hormone blocker and my endo has been the best it’s ever been.Im post meno so no issues with bleeding but post menopausal is a wonderful stage if you have endo. I still have bladder problems and bowel issues due to extensive scar tissue but no pain. Well no acute severe crippling pain. Endo sort of leaves you with low grade permanent dull abdominal discomfort but you live with it for so long it’s the norm.

I don’t have the flare ups any more which are like nothing else I have experienced. Sciatica was pretty grim but I could live with it, with endo pain I had to enter a virtually meditative state submerged in a hot bath in the dark in complete silence. It would often take 2-3 days for a flare up to subside.

Unlike most women the menopause was liberating.