Hi I’m new to here but not to endo (stage 4) and looking for some advice/support? I had a total hysterectomy 5 days ago after 20+ years of endo(I’m 45) and 5 previous surgeries, my last one being 8 months ago where they also also diagnosed me with adenomyosis, hence the hysterectomy.
This time around the endo had grown back already in previous places too numerous to list but mainly bladder, bowel and surrounding ligaments.
Much of my pain stemmed from my remaining ovary which loved to grow endometriomas hence now being put into surgical menopause, plus I was already in perimenopause and struggling with multiple symptoms.
I’m really struggling with pain and recovery and just wondering if anyone has any advice on starting HRT and finding the right balance. I’ve been given the evorel patches which I’m going to start tomorrow. Feel very apprehensive about it all and am just hoping that things are going to get better.
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Was your hysterectomy was done is a specialist endo centre and all the endo excised at the same time by a multidisciplinary team? I assume you had both ovaries removed as well.
The recommended HRT for those with a history of endo, regardless of whether a surgical team says they got all the endo since this impossible to confirm, is continuous combined HRT. So you might want to hold off taking the oestradiol until you can bet a prescription of progesterone to take alongside.
hi yeah it was done at an endo centre and everything they found was excised, I only had one ovary which was removed. They’ve given me the combined patches which already contains the progesterone
Hi,I had a full TAH with ovary removal last June. Its not a quick heal but you will see the benefits in the future. I waited about 6 weeks before asking for hrt so my full blown menopause had well and truly got a hold. I was put on the Everol patches on the lowest dose and did feel them starting to work after about 8 weeks but my body soon got used to them and I am now on the 100 patches which seem to control my symptoms most of the time. The pain aspect is to be expected as you have had major surgery. I managed on just paracetamol after a few days of codamol. I was worried about getting bunged up so that's why I stopped the codeine. I found if I took my paracetamol routinely it did help with the pain. I found sleeping the hardest thing to do. Just remember to follow the advice given regarding lifting, excercise and intimacy. I was paranoid for months after, expecting something to go wrong but now nearly 1 year on I can say I feel better than I did before my hysterectomy and even though it has been a long haul I am so glad that it has been done. I had started perimenopause before my operation and was having serious health issues due to large fibroids.
Thank you, it’s good to hear that you feel so much better. I’m a week out now and the pain from my bladder and bowels is still pretty intense. I’ve had open abdominal surgery in the past (along with 4 previous laparoscopies for endo) to remove an ovary and even the recovery from that was better. Im thinking the adhesions from my most recent endo surgery 8 months ago are probably not helping. Sleeping is an issue still, hopefully it will improve.
I was in pretty bad perimenopause too, think my ovary was on its way out, so I haven’t noticed any severe symptoms yet and I haven’t noticed anything from the patch but I’m only 24 hours in. It’s good to hear from someone that feels better than before because that’s what I’m hoping for in time.
Hi, no I had multiple fibroids with one alone measuring a 16 week gestation, that's why it had to be an abdominal vertical hysterectomy because the fibroids were too big to remove by keyhole.
A hysterectomy in those with endo, especially a history of stage 4, is very different from one in someone without endo and the HRT implications are also very different.
Hi, thank you for this. I was replying about the hysterectomy from my experience only so that's why I didn't mention endo. A hysterectomy is still major surgery so the op will have all of the post operative surgery issues to deal with as well as the previous endo.
so are you all feeling better having both ovaries removed? I had full hysterectomy 1st august and they left an ovary. However, my lonesome ovary has been hurting and my PMDD is playing havoc. They’ve offered to take the other ovary i just don’t know what to do x
Hi Amy, I only had one ovary left after the other was removed 5 years ago due to a cyst, so the one they took was already starting to fail and covered in endo deposits again. I feel SO much better now I’m quite stable on HRT. My experience has been positive compared to what it was. Good luck with whatever you choose to do
I wouldn’t say it eradicates it but it has improved things because I was already in perimenopause before my operation, and was having a lot of cognitive issues which HRT has improved. Dryness is still an issue but again it was before. Overall things have been much better but I don’t think there is any miracle cure for menopause, surgical or otherwise
I completely agree and understand. I’m peri at the moment and struggling even on oestrogel but the dryness hasn’t been an issue only like my head (the other end lol). However the PMDD mood and physical symptoms aren’t great. Did you have this too? Sorry for all the questions. I’m glad you’re ok and feeling much better xx
No I didn’t have PMDD thankfully, but I do have anxiety and that was 900000 times worse in perimenopause and has settled post surgery with HRT. I did have to get some specialist input privately into my HRT though as what I was initially prescribed wasn’t working well for me
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