Post hysterectomy advice needed

[LisaLQ]

Hi guys,

I started HRT a month ago (Elleste solo) and so far, so good, although the nagging abdominal pain continued.

Brief history: several laparoscopies in between 2000 and 2004 looking for endometriosis, none found, zoladex attempted, two failed ablations, followed by a total abdominal hysterectomy in 2004 aged 27 (I'm now 37). Adenomyosis assumed from womb appearance, but samples were inconclusive. Was told that it was 100% not endometriosis after all this. In 2008, I had an ovary removed because it had a 6.8cm chocolate cyst/endometrioma on it - surgeon said my insides were covered in adhesions, but it was still not endo (?). Same surgeon all these times.

I've since moved area, and recently have had what i thought was several UTIs, turns out it wasn't, so my GP tested me for menopause, and although the blood tests came back normal, the symptoms and history were enough for her to say that it was early stages. She referred me for a scan to see if I had another cyst because of the lower left abdominal pain (I thought this was bladder pain).

Had the scan today, and the ultrasound lady says I have three endometriomas - small but hemorrhagic on my remaining ovary, which is exactly where the pain is. Obviously, this is just her finding, it may still not be endo.

I'm going back to the GP on Weds for a review of how HRT is working, and for ALL the other symptoms it's been a lifesaver. I've had a huge reduction in hot flushes, in fact none in the last week or two, I'm sleeping better, I'm not as tired, and i generally feel lots better. The only problem I've had is this pain is getting worse, and the patches keep coming unstuck.

If it turns out I've had endometriosis all along, does it mean I can't have HRT? I'm so scared of going back to feeling like crap, but I'm also scared they're going to say they can't operate on the ovary because of the scarring (the surgeon who took the other out said that he couldn't even get to it for scarring/adhesions, and it was stuck to the top of my vagina and bladder).

Any advice? Also could use advice about a change in patches if I'm allowed to continue. I need some that aren't crinkly clear plastic like the Elleste Solo, as they just don't stick to me properly - I need some either smaller or more flexible. Any suggestions?

TBH I'm really really gutted that I've been told so many times it wasn't endo and was all in my mind, to find out from two different scans 6 years apart that I have endometriomas!

Ps. Hi to those who might remember me from the old old days of the noughties board, if you're still about xx

[LisaLQ]

Ps. Hope I've done this correctly, I'm useless with the new format lol.

[ClarePerry1]

Can I ask when you had your hysterectomy did you endo excision also - or did they look for it - I had this with my adom hysto - it may be an idea to get your gp to refer you to a endo spec at your local hospital I am not sure where you are but at Addenbrookes Cambridge I saw Mr Prentice who is excellent. After my surgery I went on Livial which is a endo friendly hrt - but as you still have traces I am not sure on this - hope this helps xx

[LisaLQ in reply to ClarePerry1]

Hi Clare,

Thanks for your reply!

I didn't have excision done as endo was never diagnosed, they could never find it. However, when I had a scan in 2008 it showed a 6.8cm chocolate cyst on my right ovary, and two 4-5cm ones on my left. I had the right ovary removed, however they wanted to take both but couldn't get to the left one as my insides were a real mess, so full of adhesions that they couldn't even see the ovary they left behind. That's the one that has 3 cysts on now, which again the lady doing the scan said were chocolate cysts. Being a few years on and in a new area (Newcastle) I don't know what the options are now.

When the old gynae saw me after his team took out the first ovary, he said there was no way he'd go back in for the other. He said they still didn't see any endo, and said the adhesions were probably from previous ops. However before this the actual surgeon had said in his opinion they were caused by endo but to see what the gynae said.

So do i or dont i? Who knows lol xx

[ClarePerry1]

Normally when things are stuck together this is Endo, as I was told incorrectly after op and then expert told them what was there. My bladder was stuck to uterus so I had to have adominal and due to lots of complications (two transfusions etc) had to be reopened two days later and also opened up keyhole. I had a lap the year before with ablation which set everything off and general gyno didnt see any of this and had to fight for Hysterectomy that's why I thought keyhole would be fine - I was bleeding internally before op. Have you had previous surgeries ? / My advice would be to be referred to nhs endo specialist - normally current gynos will know the best ones or ask gp. I would then see if you can have excision as it sounds like this would help you greatly but the expert would know better - A normal gyno willnot perform this correctly. xx