TL;DR: I was the walking checklist of endometriosis, with associated IBS symptoms, and today’s laparoscopy came back negative. So I’m back to the drawing board, in increasing amounts of pain, and don’t know what to do now.
I have been experiencing abdominal pain for over 8 years now, ever since I was 15. I was originally diagnosed with IBS and have tried medication, lifestyle changes, the low FODMAP diet, and am now vegan, but nothing has ever really helped and I still struggle with daily abdominal pain regardless of what or if I eat. I mainly struggle with bloating, nausea and irregular and inconsistent bowel movements. I have also always struggled with long (9-14 day) and heavy periods.
In the last year or so, my pain has been getting a lot worse and I’m struggling everyday with bloating and cramping, which gets worse around my period. I’ve gone to my GP multiple times and badgered them for blood tests, ultrasounds, and a gynae referral.
My blood tests have been relatively normal, US clear of cysts and other artefacts around the uterus and pelvis. Then due to huge waiting lists, I went privately for the initial consultation with a gynaecologist for suspected endometriosis.
The consultant confirmed that it was likely endo (quoting that 9/10 times, with my symptoms, it will be), and scheduled in a laparoscopic surgery for diagnosis and any required removal.
I have just had the surgery today and have been told that they didn’t find anything, they had fitted a hormonal coil and I was to be discharged with only a “coil placement check” scheduled as follow up. This has been absolutely crushing, I feel like I’m back to square one.
Gynaecology believe that there’s nothing more they can do, maybe just see if an IUD helps. But told me that ¼ of chronic pelvic pain has no explanation.
Otherwise, my next steps are a referral to gastro, potentially with a proposed colonoscopy, and/or a chronic pain specialist.
Has anyone else had any similar experiences and either did have endo? Or was eventually diagnosed with something else?
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bluephdcox
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bluephdcox we are so sorry to hear of the issues you have been facing and we know you have mountains to climb still, but trust me you are not alone now. I can personally identify with every sentance you have written. I was 'lucky' to be diagnosed aged 19, I too started with symptoms around 14/15. I am still in a loop of symptoms/surgery etc but I no longer see this as a negative (I am 46) due to the leaps and bounds that are being made, medically.
So, more importantly, back to you. Firstly, keep doing what you are doing. Knock on those doors, call your GP's, your Consultant, consider your options and weigh up the pros and cons of any help offered. And please keep sharing, it's important, let us know how the IUD is working for you.
It's always hard sharing your first post, but you did it with style, just in case you are not aware, there are local support groups endometriosis-uk.org/suppor.... Diagnosis, not required!
So sorry to hear of all you have been through, and it must be so frustrating to still not have a diagnosis. Do you know if the surgeon who did your lap was experienced in treating endo? Sometimes it can be missed, depending on where it is.
It is certainly worth seeing if the coil helps your symptoms, if it does that seems to indicate that there is endo there.
From your symptoms and previous things you have tried it sounds like you have endo, but it might be worth considering a colonoscopy to rule out other bowel issues.
The chronic pain clinic is also worth considering if your GP is not able to help you with effective painkillers. Maybe give the coil a chance to work first so if you get an improvement you are clear what is causing it.
Don’t be afraid to push for re referral to Gynae if nothing is working. You will probably have to push quite hard though.
I managed to speak to a gynaecologist in the same department and they went over my surgery notes with me and confirmed that all areas of my pelvis were checked, including my bowel, as this was a main area of concern for me. Which was encouraging that the investigation was thorough!
However, I do now have an explanation for my pain post-op. The IUD placed ended up perforating my uterus and is outside my womb, discovered after going in a couple more times and getting both an ultrasound and an x-ray. So I’m going back into surgery in the next week to remove and repair that. I might push for them to have another look for endo just to put my mind at ease.
I will also have a discussion whether they think putting another IUD in is a good idea, I would like to give it a try if it has worked for other people!
If not, I have got an appointment with gastro coming up to go down that route!
Same happened to me! Family history of endo too.After a hosptial admission of pain they said they're pretty confident I have adenomyosis. Which wasn't suggested after my laproscopy or any of my scans...
However theyve dismissed that being the route of my pain and have now referred me to urology and gastro. They're keeping me under gyne and doing zoladex injections to see if the pain dulls. They've said if the pain dulls then it is a gyne related problem.
I completely understand your frustration with the post lap results. I lost count of the amount of times I cried when they said it was all clear!
I'm on so much medication it's unreal and the side effects are ridiculous with most of them causing constipation which doesn't help with chronic pelvic pain!
Such rubbish to have to hear that so much pain doesn't get diagnosed. They tried to say that to me, and I just explained I can't live with morphine for the rest of my life...and I can't do simple things such as go on a walk most days. So it's not something that we can just ignore and bare our teeth with!!
Oh that’s interesting! I haven’t looked into adenomyosis or heard any of my doctors mention it, might be worth bringing up when I next go in.
And I really sympathise with the pain management issue, it definitely isn’t sustainable to be on strong medications and/or in pain while trying to work for my PhD or have a normal life!
Yeah, the amount of doctors I've had be so dismissive/rude is crazy. The gyne that diagnosed adenmyosis, I literally met 10 mins prior to the internal scan as I was admitted to the ward via A and E. He was adamant I had absolutely nothing wrong gyne related, despite a number of my symptoms being linked to sex and my vagina. Proceeded to do the scan and said oh looks like you've got adenomyosis. No apology or back tracking of words. Sometimes you start questioning yourself
I honestly don't know much about the diagnosis side of things. He said he couldn't be 100% certain without seeing inside the womb lining, and suggested that would potentially require a hysterectomy. I've seen some people try and get a diagnosis from an MRI
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