How do I know what stage of endo I had when I wasn’t told?

[Nikkky]

Hi, I’ve found it really interesting reading about the experiences of others on here. One thing I notice about women who have been diagnosed more recently is that they seem to be told what stage their endo is. I was diagnosed 12 years ago after years of pain and bowel problems. I assume my experience was different because the endo guidelines/pathway didn’t exist then- or at least I don’t think they did. When they’d removed the endo it was like you should be cured now and can’t possibly still be in pain. The consultant came to see me after my first laparoscopy and said “no wonder you were in pain, your bowel was stuck to your pelvic wall and stuck to and under your uterus”. He also said that I had very prominent blood vessels and an enlarged bowel. He didn’t actually mention endo and I didn’t question anything as I knew nothing about endo causing adhesions back then. I only found out I had it because it was written on my discharge form along with bowel adhesions! It’s a very long story (as it’s still going on now) but my pain returned soon after. After my returning pain was dismissed I requested my notes from the hospital. I found that on my notes it had a diagnosis of mild endo, bowel adhesions and pelvic congestion. Sorry for this long story, which is actually just a snippet (as I’ve had various ops, adhesions, ovarian cyst, adenomyosis and a hysterectomy since) but I’ve read posts on here about women who have had bowel and uterine adhesions being diagnosed with severe endo (stage 4 etc). Does anyone know if this would mean that my endo wasn’t actually ‘mild’ but was more severe? I think that first diagnosis has affected my treatment since then. For instance, not one of the many consultants I’ve seen has questioned how I’ve managed to have adhesions found during every op (in places that have been noted as normal previously). My left ovary was ‘normal’ and then when I had the hysterectomy it had to be removed as it was stuck to the pelvic wall. How does that just happen! My pain and bowel issues have returned yet again and I’m gearing myself up to see a private endo consultant. I’ve always thought they didn’t deal with it properly and I think it’s returned or flared up on my bowel after starting HRT. Any thoughts on how bad endo is classed when it’s affected the bowel and caused adhesions? Thanks

[Lucky87]

I didn’t know I had it until yesterday I always assumed as I’ve had heavy periods for a long time and remember nearly collapsing when I was in my teens. She said I had minimal which is meant to be stage 1. I had it on my bowel that was stuck to abdomen and she removed it. Also wondering if I had it in one of my tubes as I had a tube removed due to it being filled with fluid and it was blood in there. I don’t really understand endometriosis but someone said it’s where it stays in body and mutates ? Then can bleed etc idk she didn’t give me anything to read or anything just said I had it and she removed it

[Nikkky in reply to Lucky87]

Fingers crossed you’ll be okay now. In my experience they give you as little info as possible in the hope that you won’t ask any questions and you’ll just go away.

[Roobs33]

Hi,

Sorry you’re still in pain and looking for answers. I was diagnosed in September and after a laparoscopy in Oct I was diagnosed with stage 4. I have bowel stuck to uterus and vaginal wall and also large cyst removed and adhesions where everything was stuck. I was under the impression that if other organs were involved and affected that it was classed as stage 4. Was your surgery to remove it from your bowel with a bowel surgeon? As mine was left as my consultant said that it needs to be done with a bowel surgeon and gynaecology combined. I have since had another to clip an infected tube as I’m going to try IVF for secondary infertility. I wonder if all of yours was properly excised after your original op? I know that having that isn’t a cure but I think I’m a lot of cases it is supposed to help for a few years after. I hope that you haven’t got to wait long for you specialist consultation and I hope that you get some more answers and help that you need xx

[Nikkky]

Thank you for your reply, it’s really helpful. It sounds like you have received good care and I hope you are feeling well now. I think things have improved for women from the point of their diagnosis onwards. There still seems to be issues in regard to the knowledge of g.p’s and women being believed and referred to the correct department. My first laparoscopy was done by a general gynae (no bowel surgeon present) and the brief follow-up letter to my g.p just mentioned that there were adhesions and one or two spots of endometriosis. My clinical notes had more detail but that info wasn’t given to my g.p. My feeling all along has been that it wasn’t all seen and removed. My other issues (adenomyosis and pelvic congestion) have been dealt with at another hospital since then as I’ve had a hysterectomy and my ovarian veins removed. I think a big part of the problem is that I changed hospitals after that first laparoscopy. At the time I just assumed that being the NHS my notes would be accessible by the other hospital. Because that first op was played down and the gynae consultant informed my g.p that he didn’t think the returning pain could be endometriosis, it wasn’t taken seriously. I had a second opinion from his colleague (he suggested this) and his colleague was the most rude and arrogant man I’ve ever dealt with. He completely dismissed my pain, said “you need to look at your diet” and walked out of the room! He hadn’t even asked me anything about my diet, lifestyle-nothing! I was really upset when I requested all of my notes from the hospital and it turned out that my g.p had written to them saying that she didn’t think I should have anymore investigations as she thought my pain was psychosomatic. It turned out that that is her speciality as a g.p. Needless to say I never saw her again! I had depression and anxiety because my life had stopped due to the pelvic pain and bowel issues. I really hope that women are speaking up and sticking up for themselves. There’s so much more info available to us now, which is great. x

[mrskiki]

I was diagnosed 18 months ago and asked my stage but the surgeon said they could see it was endo but only an endo specialist could give the staging. I wonder if it's advanced as they had to abandon part of the op because everything stuck together - they got to part where bowel and uterus stuck and I hadn't signed up to a bowel resection.

[Nikkky]

Thanks, that’s interesting and makes sense as to why I wasn’t told. There just wasn’t the protocols in place then. I hope you get to see an endo specialist as I know that bowel/uterus adhesions are very painful x

[Dogmad6]

If it involves other organs, I think it is generally classed as stage 4. However, in a way, it's academic because endometriosis can cause unbelievably intense pain whether there is a small or a large amount.

It sounds like you've had a really raw deal. It's hardly surprising you didn't get any improvement in your pain after your first operation.

Also after your hysterectomy - hope your private consultant can help.

xx

[Nikkky]

Thanks for the support. Yes, that’s very true that a small amount can still be very painful. I’m trying to get on top of my anxiety and depression before I self refer to a private endo, as I know they’ll put it all down to that. Think I’m probably going through peri-menopause too and that’s causing anxiety & low mood symptoms (although not confirmed by g.p). I find it difficult to trust anyone in the medical profession anymore and feel I have to plan my every move with them-it’s ridiculous really! My partner (who hardly ever has the need to visit the g.p) had an emergency op last year due to a strangulated hernia. I took him to A &E and they operated on him, despite not seeing anything on the ct scan. He had a g.p appointment yesterday as he’s getting occasional stomach ache and the g.p has referred him to a consultant. I’m not saying he doesn’t need referring but I notice a stark difference in the way he’s been treated and the many occasions I’ve been fobbed off over the last 22 years! x