What questions did you wish you’d asked before hysterectomy?

[Saffie123]

Hi All, I had excision surgery (BSGE surgeon) last autumn (pouch of Douglas, uterosacral ligament and uterine wall) and since spring this year the pain has returned. I’d been offered Zoladex or a hysterectomy, but i pushed for an MRI before making any decisions (the surgeon put me on the waiting list for total hysterectomy anyway knowing the long delays…).

I’ve got the review in a few weeks. First time I’ve spoken to him since the first post op check.

I already have the MRI results - uterus fixed by fibrotic changes (along vaginal fornix and US ligaments), loss of typical myometrium zonal changes (not sure what this means? ) and solid focus (possible fibroid/contraction), bands of adhesions around both ovaries, possible old haemorrhagic component to cyst (4cm) but otherwise serous fluid suspected. Thickening both uterosacral ligaments. Fluid around ovary and POD.

I’m obviously going to ask more about the MRI, but with regards to possible hysterectomy… what questions did you wish you’d asked/what had you wished you’d known ahead of surgery. I’m hesitant to try Zoladex due to fears of worsening mood and menopausal effects (and bone health - currently mid 30’s)

I’m just wanting to make the most of the appointment 😕

Thanks

[Ange789]

Hi I took prostap for 6 months. It stopped all my pain and three months after this hasn't returned. However it really messed up my mood and also I've put on a lot of weight and now have major hot flushes and insomnia. I'm pain free but at a big cost. I'm now decided whether or not to have a hysterectomy. X

[Moon_maiden]

I’m glad I had the hysterectomy as it helped with pain. My regret was Gynae didn’t have colorectal surgeon at op when he told me he would, so I got left with twisted bowel and adhesions, had to have further op.

Get on blood exactly what will be done. Last op I wrote my list of what I wanted and got the surgeon to sign it 🤣 this was general surgeon to check for adhesions, got him to remove appendix as well.

[PinkChi]

Hi, I had a hysterectomy (for fibroids) after which I was still in excruciating pain, MRI showed severe endo and since December 2021 I've been on zoladex injections. The injections manage the pain really well, not 100% but my quality of life is massively improved. As Zoladex puts you in a menopausal state I'm on addback HRT which manages all my hot flushes, moods and headaches. Currently waiting for further surgery (oophorectomy amongst other things). I'm also in my thirties.

[Saffie123]

Thank you everyone for your replies. It’s such a tough one, I’m hoping consultant can reassure me one way or another, I just fear the adhesions&fibrotic bands are part of the problem too and hormones aren’t going to change that 😕 Need to make sure I get the most out of a rare appointment 🙈

[MAMA-Army]

Hi, I had Danazol which was awful for me. I put on loads of weight , grew hair everywhere and because it was black it looked awful. My toes, hands etc. I was also really low on it. With zoladex , I was much better. My symptoms cleared up. My moods were fine. My skin did go a bit dry though. However, as I couldn't have it indefinitely as soon as I came off it, everything returned with a vengeance. I was told hysterectomy was the only cure. However, I then got fibroids. I refused a hysterectomy though. After that I had two babies with 18 months. I breast ffedas long as possible and that helped a lot. After that, everything was back worse than before. I went into hospital for my gall bladder out and the surgeon referred me back to gynaecology. He said my insides where a 'mess' . Again, I didn't want a hysterectomy and the surgeon promised he would try and save what he could. Unfortunately, he took everything and I started the menopause right away which was horrendous. I was in hospital for 2 weeks and had to be careful for 6 weeks. The flushes, mood changes, weight gain and depression were worse because I really thought I'd be 'ok'. Obviously, it's cured the fibroids, endometriosis etc which is good but now I just have to ride out the menopause. I'm so glad I didn't have the hysterectomy when I was getting pushed for it because I wouldn't have had the 2 kids I have now. I also have to self-cathertise because my bladder was damaged too.

[Saffie123 in reply to MAMA-Army]

I’m so sorry you’ve had so many hurdles with getting to where you are and now with bladder damage. Can I ask - was the bladder damage due to the surgery or the endometriosis? After both of my last 2 laps I’ve had urinary retention and the ward has been slow to act on it, the first time I got pyelonephritis after repeated rough catheterisations 😩 and I feel my bladder hadn’t been same since, but not sure whether it’s the adhesions/endo either 🤷🏻‍♀️ it feels like there is no win in this fight 😩

[me94]

Hi can I ask if your lap after this mri showed the adhesions? If you have already had 2nd surgery did the endo return that soon after first excision?

My mri before surgery showed fibrotic adhesion utters stuck to bowel and left ovary stuck but no adhesions found during lap

[Saffie123 in reply to me94]

Hi, my first mri report was supported by a laparoscopy and histology. But similar pain came back after a delay in ovaries rebooting after surgery and my gp at one stage thought I’d had a burst cyst, so off I went for a second mri which suggested what I wrote in OP, but I went on Zoladex for 3 doses before surgery and this time from what I remember (I was groggy when he told me and were still awaiting histology) it appears to be inactive endometriosis, and can’t rule out endometriosis. The ovaries weren’t as mixed in place as the mri made him think they might be. Sorry not to be clear but I haven’t had a full discussion with the surgeon yet or any pathology results.

[me94 in reply to Saffie123]

Ah I see. Thats okay just confused as my mri stated adhesions but then apparently there wasn't any during the surgery. Hope you get some relief this time

[Saffie123 in reply to me94]

Thank you! Hope you get some relief too!