Hysterectomy and rectovaginal endo please please share advice I'm so lost

[ChicaPixie]

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.

[Bakewey]

firstly, how scary! I’m sorry to read about your shocking experience.

I do not have any real answers for you, but one thing is stuck in my mind… Due to the notorious long waits, I also tried to go privately (my symptoms v similar to yours but no rectal bleeding but lots of rectal adhesions and obliterated pouch of Douglas). During my first private consultation, I was told they would not touch me as too complicated. The consultant added, ‘ you will get frustrated and want to throw money at this but wait for the referral to come though from the specialist endo centre.’

It was a long wait but eventually I got a full hysterectomy including cervix.

Now the reason I’m writing this is because I’d sought a second opinion as I had no confidence in my local hospital gyne. I kept getting sent for scans and blood tests and then no follow up so primarily, I went privately so that some one with time on their hands could explain to me what was going on (I was sick of watchful waiting)! Anyway, I made it clear when I booked the second opinion what I was after and requested that the consultant good all the info on me / she did that and spent a good 1/2 explaining where I was at and what my next steps could be.

You can request ‘access to information’ yourself but another doctor can also bring the documents together. The private clinic let me take photos of all documentation before I left. Knowledge is power.

My consultant has told me to only have oestrogen HRT as it will be better for me since ovaries removed.

I am not due for a follow up after the hysterectomy! I’ve been referred back to my GP (who literally knows nothing about endo). So I’m listening to my body and doing what I can when I can - aiming to walk for 10 minutes today.

Of course you want to understand what was done and where you are at now. Please, rest assured knowing that this info is available to you. The past is the past and you will hopefully find the answers you need in the future. Wishing you better.

[ChicaPixie in reply to Bakewey]

Thank you so very much for taking the time to reply and share your experience my lovely, I truly appreciate it.

Sounds like you've been through a lot yourself too. I'm so sorry.

My pouch of Douglas is also obliterated and as far as I can tell from the letter from my specialist it couldn't have been touched due to this.

Thank you so much for sharing your experience too, taking photos of all the relevant documents and reports is such a good tip and after all you pay for it so it's something I will utilise. I've booked the second opinion consultation but this time I also looked for specialist who is actually knowledgeable in endometriosis. I'll put on my email that I need them to request all info from the current specialist.

Oh no, I'm so sorry that you've had no follow up at all after your hysterectomy. I feel a bit like that since I don't actually know anything about how mine went apart from the fact it was complicated. Was yours done recently?

I'm on 9th week since mine and I'm mostly ok and like you I'm trying to listen to my body and take things slow.

Thank you so much for your response and sharing your knowledge and experience. I will definitely use this and aim to be more equipped for my appointment with the new specialist.

I hope you will soon feel better and slowly recover nicely from your op too lovely. Sending hugs xx

[Bakewey in reply to ChicaPixie]

There are defo buzz words- after I came round 2 weeks ago, I remember the surgeon saying it was complicated and challenging’

Are you back at work?

Sending you love.

[ChicaPixie in reply to Bakewey]

Yes it sounds like it doesn't it? I've got gradual return to work and I'm very lucky to have an understanding environment I know not many are. So I've done a few full days and if I get tired or anything I can go home at any point. I've had 6 weeks off though and I feel it helped massively, though I did do some small admin tasks from home at about week 4.

I hope you're healing well and can have time off for at least a few weeks. I think I thought it would be quick after my previous laparoscopic surgery but with the abdominal surgery I really didn't realise I won't be able to get out of bed without help for a few weeks. How are you coping?

Thank you so much again and I'm sending strength and love your way too xx

[Bakewey in reply to ChicaPixie]

This is really useful information, thank you for sharing.

I am part of the SLT of a school (which is being v supportive). I am thinking about asking to be signed off for two more days as that will take me into the October 1/2 meaning an extra 2 weeks to recover. I was initially signed off for 4.

I went straight back after my lap (4weeks) and ended up having g to send for help as I started bleeding through my clothes in front of a young class! It’s weird that consultants tell you you’ll be better and back at work after 3 weeks. I feel like I possibly could but I’d not be doing myself or others any favours.

I’m now mobile and can get up. I’ve been v lightly bleeding for the past 5 days which is hard to comprehend. Even with this, I feel better internally than I have in years - it feels like an alien being has been removed from. My body!

Anyways, thanks again for sharing. I wish you and all of us on here a good health and happiness.

[ChicaPixie in reply to Bakewey]

Bless you, that sounds like you've been through a lot after your lap. I agree my consultant said I'll be fine after 3 weeks and back and running around but that's such a personal thing. I know women who have been able to do so but everyone is so different.

I'm so glad you're feeling an improvement already and I bet that feels strange hehe. But that's really great. I hope once you have healed up fully it'll only get better.

But do take your time on this healing process and do what you already do, just follow your body and how it feels.

I've never had an open surgery before this one so that was a big shock and how your abdomen is involved in so much every sneeze hehe

I'm wishing you all the very best lovely and thank you for your time and responses and sharing your journey too. It really did help a lot.

Sending healing hugs xx

[Sunset-lady]

I can't believe that this was private. I'm used to rushed conversations in makeshift offices at my hospital but going private was much better. I think I'd complain. You need to be really clear about what you want to know and ask. You need to see your medical/surgical records. You must be on progesterone and estrogen and I don't know what they mean by a withdrawal bleed. A resection sounds like a bowel resection which is what I would need and no, they are never keen to do this. The adhesions would have been there before the zoladex. It will have taken a long time for it to get this bad (I'm exactly the same by the way but they won't operate on me as I'm 51). How old are you? Which hospital is it (I think we can name hospitals but not surgeons). Write everything down and ring the hospital about your complaint. You have been through SO MUCH and this operation costs upwards of £20k so the least they can do is listen to you. You may be able to speak to your insurance too as I'm sure they'll help more when money is withheld. Good luck xx

[ChicaPixie in reply to Sunset-lady]

Thank you so much lovely for taking the time to read and reply. I'm thinking of complaining too, just wasn't sure if it was just my big expectations. But I'm thankful for your response. I'm sorry that you are also in a similar situation and they can't operate on you. This can be so disheartening.

It was so hard as I've waited for 8 weeks for an appointment, prepared lots of questions I had and got most of them shut down. The strange comment about my cervix was a shocker too. I thought I misheard.

You see one of my questions was how it got so bad since I've had laparoscopic surgery 9 months prior to this surgery and I was told all endo apart from pouch of Douglas was removed at the time. I'm 38 and the hospital is based in Northants called Woodland Hospital.

I think I'm definitely going to complain and I will request my record to see what exactly has been done and hopefully the new specialist I found on the BSGE register will be able to take over and make sense out of all of this.

The issue is that even if the surgery was done right, I now have no confidence in this specialist and my insurance already paid for this. But depending on my complaint I will ring them to explain too.

Thank you so much for your reply and all the advice. I truly appreciate it.

[Bakewey in reply to Sunset-lady]

Why won’t they operate at 51? I had my hysterectomy 2 weeks ago and I’m 50 - will be 51 in December…

[Sunset-lady]

It's not a hysterectomy lovely it's a bowel resection and hysterectomy. I went on for the hysterectomy but they had to abandoned it when they found stage 4 endo. So then I was referred to endo specialist who said it would be better to leave it as I've probably had it for 20 years and as I'm so close to menopause that should help. My issue is constant heavy heavy bleeding. I went private to get a second opinion and both said the same that the risk of a stoma bag is too great. I'm very active and I'm too scared to do it when I'm not in any pain. I hope your recovery goes well x