Severe bowel endo symptoms - offered zoladex after lap found no endo - advice needed

[manicsunshine]

Hi everyone, I'd really appreciate any help anyone can give. Really sorry its a long one but I feel so lost and confused. 💛

I had my first lap in 2017 with a diagnosis of endo in my pouch of douglas and minor spots near my ovaries that were removed via ablation, after suffering really badly for years.

I had about a year of relief, but over the last 4 years my previous endo symptoms have been reoccurring with a fury and new bowel and bladder symptoms have popped up. In short, I have severe abdominal cramps and pain with penetrative sex, pain with emptying my bladder and my bowels, and shooting pain down my lower back and sciatic nerve. I'm basically always on a cycle between diarrhoea and constipation and permanently bloated. I have also become very sensitive to so many foods. I never seem to be able to empty my bladder or bowels completely, as they feel too narrow like there is not enough space to exit/like there is something blocking them. I also have fairly frequent accidents with my bladder (can cough, sneeze or laugh too hard and lose control), and have very frequent urgency to go and sometimes nothing really comes out.

I have never had an MRI, and haven't had an ultrasound for months, but have had tests to rule out IBD and been told its 'severe ibs'. My consultant gynae (who is only a general gynae, not an endo expert) keeps telling me that my symptoms have no relation to bowel or bladder endo, and only tells me to keep my mirena coil in and to consider zoladex.

I finally had my second lap with her 12 days ago and before the surgery she told me again that she was very doubtful that they would find anything but she would 'have a quick look anyway' and when I came to she told me that they had looked everywhere and found nothing, but found that my uterus is anteverted, and my ovaries were quite bulky and a couple 2-3cm ovarian cysts (which she left) and she then said that she will see me in 3 months to start zoladex injections. When I got my discharge paper work, she has mentioned that they were not able to have a full and thorough look due to not being able to tilt me on the operating table.

Sorry this is an essay, but I am just so confused!!

I don't really understand why she would still want me to start a trial of zoladex if they found no endo?

Does anyone with bowel/bladder endo feel like my symptoms sound worth further investigation?

And is it worth me trying to get a referral to someone else with actual endo expertise who might look thoroughly, especially as my notes say they didn't?

I know that nobody here has the perfect answers, and sorry for so many questions, but any help or advice anyone can give would mean so much. Love to you all! 💛💛💛

[riddo11]

Hi manicsunshine

Sorry to hear about your struggles, this is clearly having a bit impact on you every day.

I am in a very similar position. I had severe endo operated on 2 years ago and had my bowel shaved, endo removed from pouch of Douglas.... unfortunately I have never really had relief since the surgery although it slightly improved.

Your symptoms sound similar to me, affected every day, although my symptoms are constipation and significant bloating every day.

I've found my consultant has also pressed for me to go down the gastro route "because they removed all the endo". I frequently remind them that my bowel issues are always accompanied by period like pains and I've previously had a colonoscopy which was clear.

I have an MRI next week, but I also decided to go on zoladex. This has made things a bit better but I still have a lot of issues. I do think I'm better being on zoladex than without. With HRT I have found I don't really suffer the menopause symptoms.

I agree it feels like a bit of a contradiction going on zoladex if they don't think it's an endo problem, but I would say consider it, and perhaps suggest ruling out IBD with a colonoscopy?

Xx

[manicsunshine in reply to riddo11]

Thank you so much for replying 💛 Yeah, it's definitely taking a toll on me daily. It feels like every aspect of my life is so impacted by this horrendous disease.

I've had IBD ruled out via blood and stool sample tests, and they've just called it severe IBS and haven't referred me any further.

I'm quite worried about the affects of the zoladex on my mental health, as I have bipolar as well and have been struggling quite a bit for the past year or so - not sure I can run the risk of my MH slipping much further.

I am definitely going to see if I can push for up to date scans and an MRI to see if there's anything obvious causing things.

Thanks so much for you advice again. xx

[Gray_endo]

Hi manicsunshine,

Sorry to hear about your struggles.

I was diagnosed with endo through laparoscopy in 2019 and began to have bladder issues. I was eventually referred to a urologist and after 2years got a diagnosis of Bladder Pain Syndrome - it might be worth looking into this and whether it explains any of your symptoms.

I had a bladder biopsy where they determined endo was not the cause of my bladder problems, but gave me a diagnosis and I am 4weeks in to my treatment for it now.

Both my gynaecologist and my urologist said that anything happening in the pelvic region can trigger another issue, I have lazy bowels, bladder pain syndrome and endo and am currently waiting for a referral back to my gynaecologist for a severe endo flair up.

Hope you manage to find some answers and I’ve found you just have to keep asking questions and pushing for everything to be looked at . X

[Brambledoggy in reply to Gray_endo]

P.S and for what it’s worth I think you need a second opinion from a good gynaecologist who specialises in endo. Try and find a BSGE accredited endometriosis centre locally to you if at all possible. Again just a Google search. X

[manicsunshine in reply to Brambledoggy]

Thank you so much for the advice, I think you're right - I am getting nowhere with this gynae and do not feel that she is actually listening or even cares to be honest. I have found a few private specialist consultants in the local area who have far more expertise than her. I think unfortunately, this is the only way to get the treatment and thorough investigations I need. Its my birthday next month, so I guess I know what I'm asking for... 😅 xxx

[manicsunshine in reply to Gray_endo]

Thank you for this 💛 I think that I will try and go down the route of seeing a urologist/gastroenterologist if I don't get any further with endo/gynae investigations. Going to try and keep pushing for some sort of answer. Thanks again xx

[Brambledoggy]

ESHRE ENDOMETRIOSIS patient Guideline_21032022 2 Please try and Google this and give it a good read. Lots of misinformation out there but these are current guidelines. Hope it helps. Nina

[manicsunshine in reply to Brambledoggy]

I'd never seen this before, thanks so much - its very informative. xx

[Lindle]

I think the red flags are the initial finding of endo in the POD which was just ablated (surface treated) and the failure to tilt the table this last time with an admission that they were not able to look thoroughly. It is vital that the uterus is lifted so that a thorough search can be made of your POD and uterosacral ligaments (the most common locations for both mild and deep disease). Endo in the POD can look superficial but in reality can go centimetres deep so just burning the surface will do nothing to address any deep disease there and can actually cause damage to increase pain. It seems to be quite a contradiction to say they didn't find endo and in the same breath say they didn't really look.

It sounds likely that you might have rectovaginal endo causing typical symptoms - pain with deep sex and shooting pains affecting the back and bowels and sometimes up the vagina. Leg pain is typical (usually but not always the left) as the nerves that runs along the US ligaments (pelvic splanchnic nerves) converge with the sciatic nerve in the sacral plexus.

It is essential that you are seen by someone with expertise in diagnosing endo and the first essential step now is an expert scan. Transvaginal ultrasound done by such an expert is excellent for diagnosing rectovaginal endo. I don't know if you have funds for a private one but this usually cuts right through all the problems getting a diagnosis and then opens the door to get you in a tertiary specialist centre. Will pm you.

[manicsunshine in reply to Lindle]

Thank you so so much for this reply 💛 It makes me feel so validated that people on here actually understand and don't think I'm exaggerating or making up my pain.

Yeah, I feel so disheartened because it really feels like she couldn't be bothered to look properly, and just completely fobbed me off, like she cut me open for nothing and potentially caused more grief. It's so tough because if we don't fight or push for ourselves- even against supposed 'experts/professionals' - we don't end up getting anywhere.

I think at this point, going for a private consultation might be my best option. I really really appreciate any advice you can give on getting seen privately, and how this was for you. Thank you so much 💛

[Brambledoggy in reply to manicsunshine]

This is exactly what happened to me and I was clueless then. I’m not now though and wish I’d had this forum 25 years ago. X

[Laura_anne_]

Hi, I'm sorry to hear about all the problems you are having, based on my understanding, some endo can be invisible to the human eye (that's what my gynecologist stated anyway) so sometimes endo can be so small or embedded between the intestines that it cannot be seen and therefore cannot be removed laprascopically, so, I'm imagining they have placed you on the menopause treatment in case there is endo that cannot be seen, as your symptoms match that if endo, I hope that makes sense! But always feel free to question your provider, it is their job to ensure you are able to give *informed* consent, and that Includes why you are being put on the treatment in the first place, I hope that helps, and best of luck with your treatment

[manicsunshine in reply to Laura_anne_]

Thank you so much for replying 💛 I think I am going to try and get another opinion from a specialist, and if they think the injections are the best management option too, then I will definitely be more inclined to try them. It would definitely help to have a bit more of an idea of the reasons she thinks zoladex would be best.

Thanks again xx

[Laura_anne_ in reply to manicsunshine]

No problem, always remember you are in control of what happens to your body, if you are uncomfortable or unhappy with anything, you are more than entitled to decline treatment or ask for more information, best of luck! Xx

[L0rlah]

Hi I'm so sorry you're having all these issues is it worth asking to see a bowel specialist? I like you had bladder and bowel symptoms and after my lap was referred to urologist who did a cystoscopy and dilated my urethra and that pretty much got rid of my bladder pain, leaks and infections. It comes back if I am really stressed but I also had some probiotics with cranberry extract in them and that calmed it back down again . They helped my bowels too. I was diagnosed with a rectocele, prolapsed rectum and redundant colon so I have that to deal with but I've learnt that I can't have dairy or lots of fruit and am just trying to manage that way. You definitely need a second opinion and I hope that you are taken seriously ❤️

[manicsunshine in reply to L0rlah]

Thank you for replying 💛

I am definitely going to try and get a second opinion from an expert, and if I get nowhere with that, I will have to see a urologist/gastroenterologist and hope they can give me some answers. xx

[L0rlah in reply to manicsunshine]

You are so welcome. The cystoscopy made SUCH a difference to me. I went from 6-7 infections a year to pretty much none. But I was knocked out for it. I hope you get some answers. I can totally recommend probiotics in the meantime again they really helped my gut, my irritable bladder and made me feel happier! I took them for about 5 months ❤️

[Outlander27]

You definitely need to see an expert. The treatment you are receiving is not good enough. Seek a proper endo gynae. Good luck.

[manicsunshine in reply to Outlander27]

Thank you 💛 I think you're right, and seeking an expert specialist opinion is the best thing to do at this point. xx

[Dogmad6]

What you are going through sounds so typical of endometriosis and you've already had it diagnosed previously. It doesn't tend to just disappear, if only! Usually comes back and gets us later! I think you are basically being fobbed off.

If you have the funds, I'd research a decent endometriosis specialist and have a private consultation. That was the only way I ever got anywhere many years ago. It shouldn't be like that but in my opinion at least, the NHS just doesn't cut it in terms of endometriosis diagnosis and treatment.

I do wish you good luck because I know those symptoms only too well.

They always try and fob you off with the IBS diagnosis. xx

[manicsunshine in reply to Dogmad6]

Thank you for this 💛 I definitely do feel like I'm being fobbed off and it just feels like she couldn't be bothered to look thoroughly. She told me before I went into theatre that she was doubtful they'd find anything, and it feels like she went in with the mentailty that nothing was there, and so didn't bother to look. It has never felt like it's gone away, and I sometimes feel like I'm going mad or exaggerating, as she has told me repeatedly that my symptoms are not related to endo, but I can feel it and I know they might be.

A private consultation is the only way forward at this point, I think. Even if I have to wait ages on their NHS waiting list for treatment afterwards, at least I will feel more confident that the specialists will know the best way to help me manage my condition.

Thanks again for your advice 💛

[Dogmad6 in reply to manicsunshine]

Yes I think you need an expert. I can't understand her attitude. Very poor! It actually sounds like she has no idea what bowel and bladder symptoms are like! Good luck in getting answers and proper treatment. xx