I’m at a bit of a loss and I was just wondering if someone could help. I suppose it’s the same old story, really.
It’s a long one, I apologise!
I was diagnosed in 2014 with stage 2 endo. The surgeon burned it off and I just felt so validated after 8 years of pain. Fast forward 10 years, I’ve had 2 mirena coils and a gorgeous 3 year old son.
After pregnancy the coil didn’t work well for me. I became depressed and my moods were terrible. I came off it in Ocotober ‘23 and figured I should try without any hormones and see what happened. In January the cyclical bowel pain came back, horrendous pain and going to the toilet (crying). My periods actually weren’t bad, but ovulation was very painful, and bleeding during. I was put on the mini pill in April.
I tried the NHS route, but was told it would be November before I’d be seen for an initial consultation, so I went privately, back to the surgeon who originally diagnosed me. He requested an ultrasound, which showed my left ovary to be likely stuck, possible haemorrhagic material and my bowel wasn’t working correctly. Due to the pain they couldn’t have a good look at my left hand side. He then put me forward for an MRI. I had a buscopan injection and the contrast dye.
The results came back normal and he kind of just said ‘well, it’s not your endo’ and has referred me to gastro (cue the same farce of going between gastro and gynae and no one wanting to take ownership). Now, I know that he isn’t an endo specialist, but I really thought I was in safe hands with him. I also know that the milder endo stages (likely mine) aren’t necessarily visible on MRIs to an untrained eye. I have a small 3cm cyst on my left ovary, but I can’t see how that’s causing my pain. I’ve come off the mini pill because again my moods dropped to a scary low and now I’m not really sure where to go from here.
Has anyone been fobbed off after being diagnosed previously? I know this is my endo, and I am so done with feeling like I’m wasting people’s time.
(I should also note that he didn’t burn off the endo that was on my bowel, and the MRI made no mention of my uterosacral ligament, which is where the endo was predominantly found last time).
Sorry for the long post, I just feel so lost and let down.
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It’s absolutely worth a second opinion. I had a NHS MRI in Feb, the general gyne team reported on it, a private specialist did, as well as an an MDT review by a BSGE centre and they all reported differently.
I’ve since had a lap, which pretty much confirmed the BSGE centre report. X
Did the ultrasound say if the cyst on your left ovary is just a regular one or an endometrioma?
You don’t say which US ligament was involved when you had the lap but I’m assuming the left, the same side that it is expected that your ovary is stuck and was so painful during the scan. It sounds like your bowel is stuck too.
It’s well documented that controlling symptoms with hormone suppression can mask progression of disease often leading to severe disease down the line. It’s probably good that he didn’t burn the endo found on the ligament all those years ago as this can permanently damage the nerve that runs along the ligament (pelvic splanchnic nerve) but at the same it’s worth noting that the most common location for deep endo by some margin is the US ligaments. As it wasn’t treated there’s no way of knowing how deep it went, even back in 2014 or whether the stage 2 diagnosis was accurate. That would have only been the case if the endo on the ligament and on your bowel was limited to just the overlying peritoneum (pelvic lining) which can’t be known.
It is also worth noting that deep rectovaginal endo predominantly affects the left side. Typically symptoms include pain with/after sex, bowel problems especially constipation and pain trying to pass stools and referred pain to the lower back and leg, sometimes pain with sitting/walking and shooting pain up the bottom/vagina.
Since you were able to pay privately it would have been best to see an endo specialist as I expect you realise now. A negative MRI doesn’t rule out deep endo especially when indicated on ultrasound. The correct protocol has to be applied; we see many negative MRIs when people actually have stage 4 disease. If you still have funds I think the best course would be to pay for an expert ultrasound or MRI to get a confirmed deep endo diagnosis which would then qualify you for referral to a specialist endo centre on the NHS. It would still be a long wait for a first appointment but if you wait until November to be referred to general gynaecology to then have further investigations (that is if you are not fobbed of again) it might add at least an additional and unnecessary 6 months or more to your journey.
We aren’t allowed to recommend medical professionals on here but there are several advanced endo specific ultrasound and MRI experts in the UK so feel free to send me a message.
It was just a normal cyst; he said it was likely just a normal part of being a woman.
Yes, it was my left ligament. It would make sense with what you’re saying. I do get a tugging sensation there too. Especially first thing in the morning, it kind of loosens during the day.
Sorry, I may have given confused information. The endo on my ligament was burnt off, but the endo wasn’t burnt off on my bowel.
I do get terrible pain with sex, but my bowels is usually the other way. Although I can go almost a week without going at all. But generally ‘normal’ bowel movements, are generally okay and not painful. But this is getting less as time goes on. I definitely get pain when sitting and it’s those shooting pains you’ve mentioned.
Thank you, it’s definitely something my husband and I are considering. I’ve privately messaged you about some specialists as I would love your advice.
Hey, I can’t recommend getting a specialist ultrasound enough. Mine showed something completely different to several nhs ones and my MRI and has guided me away from a second surgery. MRI was done by a BSGE centre and was still wrong as they didn’t have a specialist, showed my ovaries were stuck and I have since been shown them bouncing around free with an ultrasound with a specialist. I’m not saying it’ll give you the answer as my conclusion was basically no deep infiltrating so if it is caused by endo it’s superficial endo which is less successfully treated by surgery, but I found mine incredibly helpful in making my decision and the guy clearly knew what he was talking about, showed me everything as he scanned it and explained vs nhs always just a paragraph in a letter, no visuals etc.
Well yes. You have Endo it doesn't go away. Having a child, hormones, yrs on its doing its stuff behind the scenes.
With many woman it is more on the leftside. The inflammation effects the bowel and the cyst, the cyst is too small they would Operate, the Endo with me, several Keyhole Ops caused a more rigid bowel. Inflammation causing slow bowel emptying, the bowel lining got damaged. Firstly after a few yrs they said I had IBS, then IBD, now finally I do have Ulcerative colitis but only this last finally after yrs showed itself visibly in yet another Colonscopy . No gluten or lactose in diet now.
If you have any issues with your bowel I would suggest you move to a Soluble fiber diet and increase and cut the gluten and maybe the lactose to reduce inflammation, increase bowel movements and not damage the inside of your bowel to create Ulcerative Colitis in older age like me.
Belladona, Antihaistmes, fennel tea only at night if cramps appear, simple paracetamol, the reason I say paracetamol is anti inflammatory painkillers can cause other issues but I am not saying stop them, you shouldn't use both at the same time.
It's your body you its just how to work round it all.
Hey! I also have a do and em currently awaiting the results of a recent mri. First of all I’m sorry that you are going through all the rubbish stuff that a lot of us do with this stuff your pain is real and valid even if the doctors aren’t providing clear explanations for it ❤️ secondly, I was wondering if you’d had any success with the fodmap diet or noticed any improvement at all since starting?
Thank you so much! This community is just amazing.
I’ve definitely noticed improvements! My bloating is much better, and my bowel symptoms aren’t as bad. However, I am still having bad diarrhoea and it’s extremely painful. I’m also having pain on and off (needing a tens machine), but I am ovulating, so it’s all connected to that. Before last week I felt a lot better!
Glad to hear it’s helping! I might give it a go myself. My mri results just came back apparently clear and everything normal and rather than make me feel relieved I just feel more anxious than ever! Like they have been right this entire time and I’m just making things up / being dramatic. I was really thinking they were going to report deep endo due to the symptoms I’m having but apparently all is normal and now I feel more lost and sad than ever
Do you think it could be the cyst? I also was told k had a small cyst on my left ovary years ago they never did anything about. I’m wondering if my symptoms could be connected to that. Especially since you mentioned it’s worst while ovulating!
It is really restrictive (especially when you love bread and pasta as much as me 😂) but there are so many gluten and dairy free options in supermarkets now.
As all these lovely ladies have said, unless an endo specialist is looking over your results, it can be missed! The symptoms are absolutely not in your head. It’s disgusting women are made to feel like they’re hysterical and not taken seriously by medical professionals.
I would imagine that a cyst from years ago has probably gone, but that’s not to say that further cysts haven’t come and gone in that time. What are your symptoms? I’m sorry that you’re feeling so low at the moment. This disease really is awful.
Haha I feel you on that! I might love bread too much to be faithful lol.
Mine was looked at by an obstetrician and gyno consultant so I don’t know if that counts as an endo specialist?
I have been on combined pill for months and even years without a proper break to manage my endo as I can get two period a month when not taking it, so I think I need to speak to my doctor about pausing it for a while so I can actually have natural periods for a while and properly track the impacts.
However, I have had a break recently, and while it wasn’t nearly as agonising as a 0 birth control period, there was deffo some clear symptoms:
Starts with quite severe Depression
Then I get Extreme lower back pain and stiffness to the point where I can hardly wipe after the loo (apologies if tmi😂) without shouting out in pain and can hardly move
Then becomes belly cramps (not so bad at the moment with being on the pill, but pre-birth control, these were agonising to the point of feeling paralysed in some cases and unable to get out of bed) and lower back cramps with nausea (before BC, I would often actually vomit several times) - the last few period, I’ve noticed particularly a sharp stabbing kind of pain in my left lower abdomen, around 2cm in from my hip bone. Pre BC, the pains around this time would also be present all down my legs and in my ankles too.
The cramps then lessen but then I develop what feels exactly like Sciatica for a few days even weeks sometimes in my left side. Pain shooting down from a pin-pointable spot in my lower left back, down my leg and butt.
All through this I also get diarrhoea ans constipation, switching between the two the constipation usually accompanies the stomach cramps though
For about a year now, I’ve also then been getting a Pain in left side that wraps around from the front to the back. It’s an odd pain that I’m not sure how to describe. Almost like there’s a hand wrapped around some sort of organ and squeezing gently on and off. Like pulsating, and nauseating. This can feel worse a some times versus others, and at first I didn’t think there was any pattern to it, as as I say I was on pill with no break for months last year and this year. But letting myself have a period recently, it deffo seemed to come at the end, after all the usual main period symptoms and after bleeding had almost or fully stopped. So not sure if this could be to do with ovulation. It basically takes up the entire space between my hip bone and bottom rib. And feels almost like it’s moving around sometimes. I mentioned this new symptoms to the gyno I saw (who referred me for the MRI) who was confident that this would be due to deep seated endo. Which is why I’m so baffled it all came back clear!
Sorry for the huge message, and thanks so much for your support and kindness with these questions ❤️
Oh I forgot to say. I also have felt before like somebody was stabbing a knife directly up my hoohaa with lightening bolt like pains going up there, and passing stool has had me literally screaming in my bathroom plenty of times - sorry again for tmi 😂 I’ve also experienced many times a heavy pressurised pain right at the bottom / core of my pelvis, that feels almost like all of my organs are about to come dropping out of me and this is very disabling. When this happens on top of this pressure/sensation I get horrific pain that build up almost in waves.
Hey so I've been jumping between private and NHS for the last few years jus cuz u pay private U think Ur guna get all the right answers and be sorted cuz Ur paying I recently went under NHS guidance in the endo clinic and seen sum1 completely different and she has been amazing I started my 2nd round of IVF then told to stop cuz I wasn't responding (paying private) was devastated but they also missed that my tubes were blocked, doctor at the NHS sed why I haven't I been checked for this already turns out they were anyway she put me on the list for surgery and waited 4months had my surgery on Monday preformed by her she managed to do more than Wen I paid 6000 last year. I have endo on my bowel and cysts which she drained and was put on zoladex my point is keep going and u will find that right person that will listen and actually help you whether it's private or NHS and actually Ive found IV had more help and answers via NHS good luck
Oh gosh, I’m so sorry for everything you’ve been through. It sounds horrible! I’m glad you’ve been seen and had an operation so quickly. I really hope it helps you!
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your pain is real and valid even if the doctors aren’t providing clear explanations for it ❤️ secondly, I was wondering if you’d had any success with the fodmap diet or noticed any improvement at all since starting? 
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