Just been diagnosed...

[Halumi]

Hi there,

I'm new here and actually very new to being diagnosed fully with endo (and a tad down about it all!), so thought I'd seek out other women experiencing similar problems.

So just got told I have rectovaginal endo and an endo nodule, it's attached to my bowels and my ovaries are covered too. Apparently my ovaries look like they're pulled down?? Anyway this was all uncovered from a physical examination and then an MRI scan. So yeah, I have severe or advanced form of endo. Great.

The funny thing is I suspected I have some ovarian cyst or something, or even some mild endo which causes all the intermittent pain and bowel problems (which GP used to say was IBS!!). Plus I don't have very *severe* pain right now, just dull uncomfortable pains. I take painkillers. I have bowel related pains all day long, but I saw it as normal to me. By way of history, I used to have very heavy and very painful periods and painful to open bowels as a teenager which was ignored as "normal". Then I was on implant contraception, until now because I'm trying for a baby. Anyways, been four months and the pain and discomfort has returned, and I also have backside bleeding which is painful but when it's gone I feel normal? So anyways got it checked out by private docs (through work).

I guess the thing is, I'm a bit shocked. And I don't feel like I'm *that* ill, but the consultant was adamant I need surgery given how it is and it'll get worse over time. Plus they want to preserve my fertility. However, I feel a bit of a fraud?? Has anyone else felt this?

I'm waiting for a sigmoidoscopy and then will either have a laparoscopy or a more invasive surgery on my bowel. All of the above frighten me to bits! The thought of having this "bowel prep" is awkward and painful, or possibly having resection of the bowel which is petrifying.

Perhaps you could share some insights which might help alleviate my anxiety and worries? Did anyone else feel like this? Thank you.

Thanks for reading.

Best,

Halumi

[Hidden]

Hi

Bless you, you must be in shock. But you are doing the right thing by trying to arm yourself with information. It's unbelievable what doctors and even gynaecologists don't know about endo.

I was terrified about the bowel prep. It's honestly fine. Just eat a bland diet the day before and it'll be ok. Try not to worry about the what if's, they have to warn you about what might happen.

You obviously have more severe endo as you say, the fact that it's on your ovaries gives that away. I spent a couple of years resisting treatment because I didn't feel that my pain was that severe. But as I found to my cost, pain and the damage caused by endo do not go together. Someone with mild endo can be in enormous pain. I have it absolutely everywhere! Rectovaginal, uterus and ovaries adhered to bowel, front of vagina and bladder, appendix... Unfortunately for me, the endo on my ovaries turned into three large endometriomas (blood filled 'chocolate' cysts). They were not there four years ago! When I finally had surgery six weeks ago, one had ruptured and my specialist wasn't able to safely excise the rest of the endo once he'd removed the cysts. So I need further surgery.

My advice would be to find a specialist (bsge.org.uk) and refuse to be treated by anyone else. Endo specialists have the skills and knowledge to treat more severe endo, general gynaecologists do not. Your GP can refer you. If you go privately through work then I would try that. I got my appointment within two weeks and my procedure two weeks after that. I really recommend the Facebook group endometropolis. The lovely ladies on there helped me find my specialist as there were quite a few in my area. The website endopaedia is also excellent for information on endo.

I know what you mean about bowel habits, It's funny what you 'normalise' over the years. I was always told these things were part of being a woman. I got to my late thirties before I realised that passing out in pain was not normal... I just thought I could put up with that once a month. You may be in more pain than you realise.

All the best, I know an amazing specialist if you're in the north! X

[Halumi in reply to Hidden]

Hello Cookie1975,

Thank you for your reply, I really appreciate your taking the time! It's really nice to know that some people do get it!! Especially the fears surrounding the unknown stuff. I agree I shouldn't worry so much about the "what ifs", but I suffer from generalised anxiety so it's been difficult to keep it out. I will try!

Yeah it is a bit confusing when you can have mild symptoms but severe endo, that's been the shocker for me. But the more I read about, it's not so uncommon!! I guess I should feel happy I am not suffering as much as many other women are.

I have viewed that website and noticed there is nothing near me. I live in Berkshire. Also, if I am being seen by a private gynaecologist who has specialism in laparoscopy treatment and he mentioned that IF he has to do the resection then he will be joined by a specialist in that area too. Is that sufficient or should I seek out someone else? From my experience so far this gynaecologist has been pretty good at suspecting the right type of endo to diagnosing it with evidence. So.. wondering if I still need to look elsewhere?

Just waiting for the sigmoidoscopy appointment now and then will know more. Urgh back end to the year, but gotta think positive!!

I'm sorry to hear about your endo, looks like it's spread so much. How are you coping now?

Thanks again!

Halumi x

[Hidden in reply to Halumi]

Hi! I'm doing well thank you! Just got to get my head around having another procedure now. But I believe things happen for a reason!!

I think you have a lot of questions to ask your consultant. Just because you're going privately doesn't mean you're getting the best. At the end of the day, unless he has previously been a bsge trained endo specialist, he absolutely will NOT have the right skills to treat someone with moderate/severe endo. The most important question is how is he going to remove the endo? If he uses a term other than excision, stay away. Do not let him operate on you. Moderate/severe endo MUST be excised. If not, it WILL come back. Any other treatment is like taking the top off a weed. The problem is still there underneath.

Personally, I'd find out where Stella is being treated and travel in to London? I was 100% confident in my consultant and made a five hour round trip to see him privately. It was not worth letting someone locally treat me. One of the local ones I saw was a laparoscopic specialist as you describe. He could not understand why I'd want to see anyone else. Thank goodness that I ignored him.

X

[Starry in reply to Halumi]

To your question: "if I am being seen by a private gynaecologist who has specialism in laparoscopy treatment and he mentioned that IF he has to do the resection then he will be joined by a specialist in that area too. Is that sufficient or should I seek out someone else?"

If its deep, recto or severe endo then surgical treatment should be at a specialised centre due to the advanced surgical excision skills and training needed to remove all the endo and avoid need repeated surgery. Lots of people can drive a car very well, but not all of them have the specialist handling skill to race around a F1 track at speed. You want someone who knows the racetrack and is Endo experienced.

If your Gynae is connected to or developing as a specialist together with a centre, no worries. But if not then as a General Gynae he should be referring you to a BSGE specialist see point 3.2.2 in the NHS guidance for severe treatment. england.nhs.uk/commissionin...

"Gynaecologists in secondary care, who identify severe deeply infiltrating endometriosis or recto-vaginal disease at laparoscopy, or open surgery, will refer patients from secondary care to an Endometriosis centre. "

[Halumi in reply to Starry]

Thank you so much for this! I guess I have to ask the gynaecologist plenty of things. I'll make a list. He did mention the surgical excision part. I've also got in touch with my GP to see if I can be referred to an endo centre. I have no idea how long that referral will take on the NHS. How long did you ladies have to wait?

Thank you so much again. I really appreciate it x

[Stellauk in reply to Halumi]

NHS referral can be a very long wait. If you have private health insurance it is best to go through that way.

[Stellauk]

I found out I had severe endometriosis effecting ureters, bladder, and bowel. I only had mild symptoms and never suspected endometriosis. The consultant I had in London is an BSGE credit surgeon and the colon surgeon are both very good. Overall I had excellent care. If you want to know the consultant details then pm me as we are not allowed to name any one here.

All the best.

[Starry]

Almost exactly how I feel to the letter! Not sure I can alleviate your anxiety but I can empathise a lot as I share it too. My pain too is that more dull sicky ache, till now its been hard to take in really. I guess I just adapted to period pain, dyspareunia (its meant to be painful right? All the medical people when I was a teen and in my twenties told me so)

I too have a nodule and saw a BSGE specialist yesterday who says not fibroid per the U/S scan notes but pretty much certainly Endo and very probably very advanced. I guess he would know. Waiting on my MRI now but suspect my hopes of avoiding surgery ("I dont feel that ill so why do you want to do this again?") seem to be diminishing.

[Halumi in reply to Starry]

Sadly glad to know I'm not the only one who feels this way! I wish there was an easy escape. I hope you get your diagnosis soon!

I feel so sad and tearful today. The more I read about this bowl resection stuff I get really scared. I don't want that.

[Starry]

Hugs Halumi, think you can reach a point of doing too much reading up, and scaring yourself . I've had to stop myself a few times as i have a real terror of any op even diagnostic, after an unlucky cervix op way back. If you find a good specialist they can work wonders and they are extremely careful. The guy I met said that thankfully he's never had one yet so though possible i don't think it's common at all.

[Halumi in reply to Starry]

Yeah I think I need to limit it. I suffer from generalised anxiety too so this is just quite hard to put at the back of my mind. But then I feel like I need to be informed so I look up stuff again. Thing is, I hoped and really believed I had something more mild. Then turns out I have a very nasty version of endo. So now it's difficult to manage my own expectations.

Just taking a day at a time *hugs*!

X

[Halumi in reply to Starry]

Oh you poor thing had other ops too! This week basically be my first. I guess it's the unknown which is scary. Fingers crossed it all works out well! X

[Starry]

Thanks. X I have anxiety issues as well too, so totally get what youre going through The other op was minor cervix diathermy and only under a local but instead of a couple of days recovery I got an infection and was ill for weeks. This will be my first general anaesthetic. It's hard to put things out of your mind....just wish it would come quickly now.....

[Halumi in reply to Starry]

Hope your anxiety issues are alleviated soon. It's such a bore and never-ending.

I have the sigmoidoscopy on Tuesday and that is all I can think about right now. Makes me feel like a right wuss lol. Fingers crossed the light is at the end of the tunnel x

[Halumi]

Hi Lindle,

Thanks for your reply. I think I was a bit exaggerated when I said he was adamant, he did just recommend my options and said we will discuss further after the sigmoidoscopy. I have pain and back passage bleeding though, plus I am trying for a baby, so I think that's why there is also a desire for preservation of fertility. The way it's been described to me so far and how I've read about it, convinces me surgery is actually the only way forward as I have scar tissues, adhesions and cysts all there. That's what the MRI scan picked up.

I read up on the BSGE website and about the criteria which makes it a specialist centre. If I understand correctly, isn't it to so with how many trained specialists (e.g. a gynaecologist and colorectal surgeon) work together on the laparoscopy. If the private gynaecologist and colorectal surgeon do this together surely they follow the guidelines? I agree they would need to follow the RCOG ones. But do private hospitals / consultants follow NHS guidelines? My insurance won't cover to go to a BSGE as far as I understand or know so far. But I will definitely ask all of these questions at my next consultation. This gynaecoloogist specialises in minimal access surgery but I will ask him more questions on how many he has done, which guidelines he is following, etc.

I am really afraid of waiting longer. The private route so far has been great as it's been 3 weeks and I already have the diagnosis and someone taking me seriously! If it goes well, I could probably be give the op by next week. If I go to the NHS, they will probably refer me now (given there is MRI scan proof and not just my symptoms) but the wait will be long and agonising (from what I gather most people go through). In any case will see wretched GP friday to tell him how wrong he was and misdiagnosed me, and should put me on referral straight away!!

I am in pain and feel so down. I just want this over.

Thanks for the facebook group, I'll check it out.

Best,

Halumi x

[Halumi]

Thanks so much for the detailed reply! I do agree with you and will ask all of these questions. I'll dm you. Thanks again x

[Starry]

Not sure if it helps but insurers are regulated and obliged to treat customers fairly, which providing a lower or riskier standard of care than required by NHS rules would probably breach.