Hello to all of you amazing endo warriors. I am in need of some advice please. I apologise for the length of this post but wanted to add the details to give some background. I know many of you have been through what I'm going through and I'm so sorry I also hope you can share your thoughts with me based on that.
I am on crossroads of my current treatment plan. My endo story, well for many years I suffered with heavy periods, painful and clotted. But the last 6-7 years I also experienced rectal bleeding, constipation and a lot of gut related symptoms. I was always told it's IBS or I have tear somewhere and need to heal.
Last year it got really bad and I managed to get referred to a gyne and gastro specialist but privately. I've had colonoscopy which was really painful but confirmed I'm ok. The gyne did an internal ultrasound and found cysts on my ovaries and endometriosis as well as an endometrioma.
I've had laparoscopic surgery in November last year during which I was found to have 'severe adhesions to bowels with endometrioma underneath it', 'right ovary plastered to the right pelvic sidewall' and 'rectovaginal septum completely obliterated ' with upper abdomen normal. Adhesions were 'carefully divided', 'endometrioma was removed ' and 'rectovaginal septum could be dissected down but not fully'.
All of this was in my post surgery letter. I've had mirena inserted and I was told I should be ok.
3 months down the line I started getting bad pain with bowel movements again and constipation as well as rectal bleeding for weeks on. I started to have issues with my bladder too and a lot of pain in my upper body.
I was told to go on Zoladex for 6 months. Which I did, despite it causing a lot of side effects for me I managed the whole 6 months and every day was a struggle to be. After that my gyne recommended I have hysterectomy with removal of ovaries. I was told that no guarantee but it should help with the rectovaginal issue since the endo there has not been removed. I thought about it and agreed.
I've had my hysterectomy in August this year. And while they tried laparoscopic surgery, then vaginal they had to open me up. The letter stated that ' uterus was extremely adherent', 'the left side tubes and ovaries were completely plastered to the pelvic sidewall', 'posteriorly complete obliteration of the rectovaginal septum', 'quite advanced bladder, rest of the pelvis and upper abdomen '
They removed my uterus, tubes and both ovaries but couldn't remove my cervix due to the 'completely obliterated rectovaginal septum'. I had 'adhesiolysis' performed. The recommendation is now that I go on combined HRT for a while then go off it at some point to see if I get a withdrawal bleed.
Now if you got this far, thank you! Please bear in mind that really, I was very naive during the first laparoscopy, at that point I knew I had endometriosis but I had no understanding of how severe this can be or what to expect post op or even that a normal gyne might be out of their depth in the subject. I truly didn't know. Only while being on Zoladex and coming to this forum I started to learn and I am still trying to learn as much as I can so I can advocate for myself more.
Now, majority of my appointments with my current gyne have been not great, they were always late and rushed and never really given me much information or listened.
I thought with hysterectomy on the horizon there is chance I'll better.
After the operation I was told to take off my bandage and dressing, but I not only had laparoscopic wounds around my tummy but also an open wound from hip to hip. I requested to go back to hospital to have them look at the wound two weeks after my surgery and take off dressing. Then a few weeks later in the shower I found a piece of string on my hand when washing, I panicked and my gyne secretary told me it's ok nothing to worry about as it's part of an internal stitch.
Finally 8 weeks after my op I've had my post op appointment and I've had a lot of questions on where in my upper abdomen endo was found, and how comes in 9 months while being on Zoladex it has gotten so bad. As well as some other questions.
My gyne was an hour late as they were operating, got into the appointment and started talking about my symptoms. I asked about the rectovaginal situation as I've had rectal bleed two weeks after my surgery and the gyne mentioned a resection when I was in hospital, but this time I asked what they meant by that and i was told it is when they have to go in and get close to that area. But they are not keen on doing so.
At one point my doc said that my cervix will fall out...I was confused and also concerned so I asked if I understood it right, but they said yes it will fall out. So I asked again and then they said no no it's only if we have to go back in again to operate.... Then I asked about HRT to prepare if there are any symptoms or side effects I should be aware of or worry about, I was told I won't have any. I just need to wait for my body to settle. I was given prescription for patches and internal estrogen. 11 minutes in I was very much rushed and told to come back in 12 months.... This gyne didn't even look at my wound or examined me internally too check.
Now I don't think this gyne is listed on the endometriosis centres site. But like I said I didn't know about it at the start of this journey and trusted them.
I left the appointment and cried all the way home. I still don't know if I'm ok now to resume normal activity, can I exercise etc. But main thing I don't know what endo was removed and wasn't as well as where in my upper abdomen it was.
I guess I'm here to ask for your help in understanding should the gyne do any kind of examination on me? Am I unreasonable to expect some kind of overview of the op in more detail (apart from the surgery letter which is the only thing I have that tells me what happened)? All of this was carried out privately and my gyne said to close my claim with my insurance.
I have found a specialist who is listed on the BSGE register and I've booked to see them but I'm worried they won't know what has already been done and I don't know to what extent the current gyne has made notes to explain what she saw whe she operated on me.
I mean I might not get much pain going forward I don't know but I'm very concerned that a lot of endo was left especially in my rectovaginal area and if this starts play up again I'm not sure what are my best options.
Can anyone share your thoughts? Have you had experience of RV endo with hysterectomy? How did you cope?
I just feel so lost in all of this. I've changed my diet and all my life really to help and I'm just a shadow of myself.
Thank you in advance for reading and your support.