Any advice or similar experiences would be greatly appreciated

Hello all

I have joined this forum today but have been following a lot of your stories and posts for some time. This is my story so far...

I have had symptoms for around 7 years and after multiple visits to GP and various trials of pills, as well as the mirena coil I finally saw a consultant who took me seriously back in May. I had a couple of ultrasounds which showed two largish cysts and a blocked Fallopian tube (hydrosalpinx).

The Consultant booked me in for surgery to remove the tube, ovary and the cysts two weeks ago, and also an endometrial ablation.

I was taken down for the surgery, and when I came round, I was devastated to find that only the ablation had been done. They'd put the instruments in for the laparoscopic removal but found a large tubo-ovarian mass instead that was stuck to the bowel, uterus and pelvic wall. She was unable to carry out the removal of anything.

When she came to see me afterwards, she said that I would need a total abdominal hysterectomy, and removal of both tubes and ovaries. A couple of days later she sent a letter to my GP repeating the above information, and also stating that I would need a stent and a colorectal surgeon standing by too.

I was a bit scared by all this, but I felt that if this was what was required to alleviate my symptoms then I was prepared for that. I was asked back into the same surgeon's clinic yesterday to discuss this.

When I arrived, I was seen by a registrar instead who didn't seem that familiar with my case at all. He informed me that my surgeon had injured her shoulder and wouldn't be doing any surgery until January! I expressed my concern, as I was really hoping that I would be treated. He said that he would try to pass the case onto someone else for them to take on and I would hear from them in due course but he wasn't sure due to the complex nature of the surgery.

I was really upset at the prospect of having to wait even longer in my present state. I look and feel about 6 months pregnant, am in near constant pelvis pain and am exhausted after all these years - I'm sure that lots of you know how that feels!

Anyway, he then said that in the meantime I could have a Prostap injection, which may help with trying to shrink the mass which he said was endo. I had it there and then without really having time to think.

I have now read up a bit more on this treatment, and I'm not sure I like the sound of it it all. Woke up from a restless night with a horrible foggy head too. I'm due to have another injection in a month, when I really hoped that I'd be having the surgery by then.

I'm at my wits end, with many symptoms... Can't really do very much and feel very low with all this going on. I really feel that if the original consultant who did the failed surgery said I need a hysterectomy then that is what should be being put in place. Not being fobbed off again which is what it feels like.

I'm so sorry that this is so long! I just thought it might do me good to write my story down, in the hope that some of you may have had similar experiences, or even just to share your story with me.

Thank you so much. X

13 Replies

  • I had a very similar experience - was told before the lap that I would have ablation but woke to be told that my endo was too extensive and none of it had been removed. The surgeon that did the original surgery said my option was hysterectomy + removal of ovaries. I was pretty devastated, but at that point willing to have the surgery if that was my only option.

    I was then put on decapeptyl (similar to prostrap) while I made a decision but over the next couple of months it became increasingly clear that the gynae didn't want to do the surgery due to the degree of bowel involvement and I was eventually referred to a BSGE centre instead. If you are not being seen by one of these centres, it is really important to get yourself referred to one. They are really experienced in dealing with endo and may be able to give you more options. Although the BSGE centre I am now being seen at is still suggesting hysterectomy + removal of ovaries due to the severity of my endo, I would be far more confident to have it done there than by the gynae I saw before.

    At this point I am not ready to agree to a hyst and hope to manage my disease with an excision surgery and hormones/pain killers. With time and space to think about it I am just not willing to let them remove my ovaries at the age of 38 - hysterectomy isn't a guaranteed solution, and it is a massive surgery that brings it's own problems. The first month on decapeptyl was hard - you get a hormone surge but it does pass and I did feel better on it, and it gave me enough reduction in pain to be able to think more calmly about what I really want, treatment wise.

  • Thank you so much for your response.

    It's interesting what you've said about seeking advice from elsewhere. They do seem to be concerned about the bowel tethering & but have said that a gynaecologist would do the surgery still alongside a colorectal surgeon.

    You've made me think about the full hysterectomy now. I just assumed that I'd got no other alternative. I'm 43 so was prepared to have it if got rid of everything and I could get some quality of life back though.

    Keep me posted on what happens with you.

    Thanks 😊

  • Where in the UK are you?

  • West Midlands

  • This really is a blessing in disguise. You clearly have a complex case and if the surgeon just went in and basically came back out in the knowledge that such a surgery as you need requires planning with a bowel surgeon, then this was the right thing to do. But she had fallen down in that you should then have been referred on to a BSGE centre where the surgeons have done advanced training in complex surgery. A hysterectomy is not the answer unless your uterus itself is diseased. You will need an MRI to see what else might be going on so surgery can be carefully planned. Have a look at my post on the treatment pathway and on how to find a specialist centre. Will private message you later with a suggestion for a surgeon in your area. X

  • Thank you!

    I have looked at your pathways post. It was really interesting. I am currently in the process of being allocated another gynaecologist though.

    I feel like I just want something done as I've waited so long. 😣

  • Obviously it is your choice but it would be against nhs guidelines for this to be done in general gynaecology. There is no such thing as a quick fix when it comes to the treatment of complex endo and this is what the centres are for. There is huge scope for damage to organs and nerves if such complex surgeries are done without the required advanced training.

    I have written my post on the treatment pathway for a reason other than interesting reading - to try and ensure women with complex disease get the best care for the best long term outcome.

  • I felt the same - I had been ill for such a long time, and it took so long to get a diagnosis that I just wanted it all to be over. Unfortunately, there is no such thing as over when it comes to endo, especially if your disease is advanced. Not even a hysterectomy can guarantee that.

    The time I had on decapeptyl gave me enough time with minimal pain to come to terms with the diagnosis and what it meant. I really needed time to grieve, I think, and I felt very sad and angry, and it wouldn't have been a good idea to make decisions about life changing surgery at that point. Now I've had a bit more time to accept it, and my husband and I are working together to maximise our quality of life whilst having this disease as part of our lives.

  • Well I can't imagine they would allow a surgeon to take it on if they weren't trained.

    Surely if I start looking at other avenues for referral to other Consultant's, I'm back at the start of the process again.

  • Any gynae who is trained to carry out a hysterectomy can carry one out. That doesn't mean it's the best solution for someone with endometriosis. A hysterectomy with endo is not the same as a standard hysterectomy. It's a complicated, difficult surgery.

    It is at the end of the day your choice but the BSGE centres are there especially to help us, and they offer more than just basic gynae surgery. They're more experienced in the use of drug treatments, they have pain management specialists, they use advanced keyhole surgical techniques which not all general gynaes are able to use. Bowel endometriosis in particular is very difficult to treat and BSGE centres have colorectal surgeons who are very experienced in dealing with it.

    It might mean waiting a bit longer, but there is no quick fix here I'm afraid :/

  • I know. And thank you for your response.

    I have just checked and it seems that where I am being treated is a BSGE centre too.

    I know that there is no quick fix, but if there is a way that I might have a chance of feeling better then I think I'd be willing to take it.

    Thanks for your response. I wish you all the best.

  • Even though your hospital has a BSGE centre it doesn't mean you are being treated appropriately if you are currently in general gynaecology. It sounds implausible but there have been many instances where women have been operated on for complex endo in general gynae departments by unqualified surgeons when there are centres in the same hospital. The only thing that matters is that the gynaecologist and accompanying surgeons are named on the list. There does not seem to be a woman gynaecologist in the teams in your area but I may be wrong. So I assume you have checked she is named on a BSGE list. We are very lucky in England to be able to choose who we are treated by and the complexity of your surgery makes it all the more important to do your homework and get this right. Even the BSGE surgeons vary in their abilities and will sometimes refer on to those known to have the most experience The mass you have sounds very complex and being in constant pain suggests complex endo elsewhere. What did she find when she searched the pouch of Douglas - was it even accessible? Were any nodules felt when a rectovaginal exam was carried out? You need an MRI before any surgery is done to give some idea of what they might encounter in your pelvis. But as we have said you must ultimately do what you feel is right for you - we can only advise.

  • I have had exactley the same experience as yourself, the ablation was the worst thing they had ever done for me. I have been in constant pain two yeras post surgery - I was too scared at the time tyo have the TAH as like yourself there was a suggestion of needeing a colostomy as my bowel was so badly damaged. At 39 with an active sex life and I was in no way mentally prepared.

    My husband and I have just celebrated our 20th wedding anniversary and went to Spain but haemorrgahed black foul smelling clots for 2 weeks and was in incerdible pain.

    I landed at went to GP who referred me straight to Emergency Gynae.

    I am now waiting for an MRI n Tuesday

You may also like...