After having a laparoscopy over 2 years ago and being told that I do not have endo and that I have IBS I am still in excruciating pain.
I have tried multiple tablets for IBS as well as diet changes with nothing helping as I’m still in the terrible pain all the time. I have tried antidepressants that help with the pain and still nothing.
I had an internal and external ultrasound two weeks ago and was told it was all clear. I have been referred to a pain team now to see how to manage my pain but I can’t help but see this as a plaster not actually fixing the issue.
Has anyone had any experience with not finding endo on their first laparoscopy? If so how did you get people to finally listen to you and try to look for it again.
My doctor is now adamant it is a gynae issue but isn’t sure what issue or what to do now apart from the pain team.
I suffer with migraines, back pain, abdominal pains and severe bloating, pain during intercourse and heavy/ pressure feeling pain.
I’m doing my 4th year in uni this year to qualify as a teacher and I’m so afraid that I’m going to be too unwell to do it as some days my legs just shake and I struggle to walk.
Any help or advise or encouragement would be greatly appreciated!!
Hope you’re all well💕
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CourtneyD
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Hiya, I'm a person with endo and not a medical professional so this comes from that perspective. It sounds like endo and it sounds like you're not happy with the care you're getting. There's the royal college of obs and gynaecology that you could contact or endometriosis UK to get advice on next steps. You're heard and it sounds like you need some guidance so I hope this helps somewhat. Wishing you the best!
It'll be worth it. Just focus on what you feel is going on and help your gut guide you. If you feel you're receiving inappropriate care that's OK just talk it through with the clinicians and contact endometriosis UK directly or the Royal college of obs and gynaecology for guidance on how to get your symptoms addressed. I'm sure everyone is doing their best but I totally empathise with your position. Sending love
Thank you so much for responding! Yeah it’s just hard my doctor is lovely but it seems like as I had a laparoscopy and nothing was seen it’s like my chance is over now kind of thing but I shall try that thank you!xx
He is down as an endo specialist that works privately alongside the NHS so I paid for the consultation and then crossed over to NHS for the op but when I saw the pain nurse she was adamant I had it in my bowel as I can’t sit or stay still at all without being in pain and I feel he just looked at my bowels and saw they were inflamed and put it down to IBS he didn’t mention looking around my bowels or behind so I’m not sure if it was missed that way I know I wasn’t under for that long. I have also heard of being on the pill constantly affecting the fact of it being seen. I feel whenever I bring it up to a doctor I look as though I’m judging their ability but sometimes you have to ask these questions to get anywhere! Ah that’s so horrible to not be expecting it hope you’re okay! Xx
You’ll have to contact them, and/or ask for a copy of records. The consultant at lap knew it was in the bowel. He initially thought superficial. He didn’t say it was in the bowel until follow up, I think he wanted to see what would happen. When I said nothing had changed, that’s when he mentioned it. I get issues sitting, etc.
Keep pushing, it’s very important to get the right diagnosis, and hopefully treatment. If I’ve learnt anything part of the severity of mine is because I didn’t do anything about bad period pain, it’s definitely not the right path. I do also hold the medical world responsible due to crappy comments many years ago and not acting on things last year.
Just because you don’t have Endo it doesn’t mean you don’t have one of a lot of other pelvic conditions. You could try see a pelvic physio and they will give you exercises to help stengthen your pelvic floor and other issues you may have. This helped me when I was able to do them. She tailored them to my specific issues (bowel/rectum Endo) to try and strengthen those areas.
I have adenomyosis as well as Endo. Have you been for an mri of your pelvis? Basically it’s Endo they hides in the muscle lining of your uterus. It causes heavy bleeding, do you suffer from heavy flow? It causes me a lot of that heavy pain feeling. Basically as the implants grow the lining of your uterus gets thicker and thicker. There’s no cure except a hysterectomy.
You know your body so don’t give up. Just because it’s not Endo doesn’t mean it couldn’t be something else similar. There’s also PCOS. It can be so frustrating when you can’t seem to get answers.
Ah I have never thought of that! At the moment the pain has been so bad I’m struggling to walk but everything is a process isn’t it!
I haven’t had an mri done I did ask my doctor about adenomyosis and then she referred me for an internal ultrasound which came up clear frustratingly enough😫I did suffer from heavy flow really badly when I was having my periods as soon as I went to the doctors and explained the situation they gave me the pill to take constantly to stop my periods so I haven’t had one for 4 years now.
It is so frustrating trying to be heard I know my body isn’t right and I know I have all the symptoms that goes along with endo/ adenomyosis😫 I have been diagnosed with polycystic ovaries during my lap but they have said it shouldn’t be causing me any pain or any of the trouble I have been having which is frustrating! Manu thanks for your help and response!xx
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