Hello all! I was wondering if anyone would be kind enough to share their experiences or shed some light on my current situation? 🙂
I have recently had an ultrasound which revealed fluid-filled sacks on my ovaries and fluid in my pouch of Douglas. I have also been told that my uterus tips backwards? I'm not sure exactly what that means medically speaking lol
I am now in the situation whereby, due to corona, I am waiting for things to return to normal so that I can have a laparoscopy to diagnose endo and blood tests to rule out polycystic ovary syndrome. This is the extent of what my GP has shared so far.
I am feeling quite overwhelmed with all of this information and my thoughts are on hyper-drive, hence still being awake! My main symptoms are severe bloating, stabbing pain in rectum as well as alternating constipation-diarrhoea (worse during period and ovulation), abdominal pain and pain during and just after sex. I've been told it is IBS since I started presenting with bowel symptoms at 12 years old.
Can anyone relate to this? I am really wondering where, if anywhere, endo would be located and what stage it would be, whether surgery would be necessary etc? I have read so many terrifying stories about bowel endo particularly. I am also worried about diagnosis, as I have read that it is hard to diagnose endo in the pouch of Douglas by laparoscopy? If anyone can shed light on any of this and put my mind at rest that would be a great help ❤️
Xxx
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rebekah2311
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Hi Rebekah. Sorry to hear of your problems so far! I have been diagnosed with stage IV endo, which at this stage it is the most severe as there’s cysts on the ovaries too (endometriomas). The cysts you’re talking about might just be normal simple cysts.
The only definitive way to diagnose endo is via a laparoscopy. I had an endometrioma on my ovary, bowel, pouch of Douglas, everywhere. It even got inside my ureter which was causing a blockage so I had to have reconstruction surgery on it, but my surgeon has told me that he’s never seen such a severe case of if, so I guess I am just unlucky!
My main symptoms were extremely painful periods, painful bowel movements, blood from the back passage (sorry if TMI)! But that was only effective when I got my period.
I don’t think I’ve put your mind at rest so I am sorry. I had an MRI scan to diagnose my endometrioma and when my endo consultant examined me he could feel a nodule on my pouch of Douglas xx
Thank you so much for your reply. I feel like any information at this stage is helpful, preparing for all eventualities and all that!
It sounds like you've had/are having a really horrible time with your endo and I'm so sorry. I can't even imagine how difficult reconstruction surgery must've been. I hope you've been feeling a little bit of relief since then.
The one thing I was most confused about was having multiple cysts on each ovary. I googled it (probably not the best idea I know) and all that came up was Polycystic ovary syndrome, which I don't feel like I have any symptoms of. I did read about endometriosis causing blood-filled cysts, but from the way it was worded it sounded like with endometriosis there would only be one or two cysts? Reading about fluid in the pouch of Douglas was a little bit more straightforward, but then I began worrying about diagnosis in such a difficult spot. From your experience, would you recommend an MRI before a laparoscopy? Xx
Hi rebekah2311 sorry to hear what ur going through, ur symptoms sound like mine and I can relate with u, I've been diagnosed with stage 4 endo via lap, I've also had an MRI which showed its everywhere, my pouch of douglas, my uterus, tubes and bowel are all stuck together and I have a nodule in my back passage and vagina, they also think it's gone into my bowel, the pain when going to the loo can be excruciating and I go from constipated to diarrhoea at the flip of a coin, I'm now waiting for surgery but with the Coronavirus around that's been pushed back 😔 I've found that the depo injection has helped with the bleeding (no bleeding at the mo) and daily taking of meds gets me through most days, night times are a nightmare, trying to get comfortable and fall asleep, hope this has helped in some way, gd luck xx
Hi sorry just thought I would add this too, I also have a tilted uterus and as far as I've been told its nothing to worry about, just makes having a smear test done a bit more tricky, (normally clenched fists under bottom of back to push up makes this easier) xx
Thank you for your reply! I'm so sorry to hear about your situation, particularly having your surgery postponed and having to deal with these bowel symptoms. I don't know whether the pain I have going to the toilet is anything like what you are experiencing with the most severe endo, but I really sympathise and hope your surgery is rescheduled soon so you can (hopefully) feel a little better.
Thank you for shedding some light on the tilted uterus situation! You mentioned that your uterus, tubes and bowel are all fused together - do you know if this is what causes the uterus to become tilted? I was trying to learn a bit more about this and I came across one explanation that said a "normal" facing uterus can become tilted if endometriosis tissue fuses the uterus to the bowel? I was wondering if you knew anything about this or if it was just some misinformation, or whether it would have shown during ultrasound in any case?
Wishing you lots of strength whilst you're waiting for your surgery and best of luck. I hope you can find some relief from it
Hi thanku 😊 I was told about my tilted uterus before I knew i had endo, they said it affects some women and they dont even know they have it, but I'm not sure if the endo can have anything to do with it too 🤔. What I would say is dont let the stages be the judge of pain as someone with stage 1 could have more pain then someone with stage 4, it's just so crap and even more so with the Coronavirus around! Sorry I cant be more help, gd luck and I'll be thinking of u x
My advice would be to spend time in lockdown reading up (if you like information) on endometriosis treatment, and do some researching on the best surgeons see if you have a endometriosis unit or hospital department in your area.
The GP may refer you to a general gynaecologist and you need a specialist that can do excision surgery not laser if they do your lapscopy.
That means you won’t find yourself having numerous surgery’s one to diagnose one to treat etc.
You can ask through the NHS for any surgeon you like, may wait a bit longer?
Also private consultants, for approx £200 can diagnose and then refer you back into NHS quicker, so that’s one way of being seen a tiny bit sooner after lockdown.
Also fully private do offer payment plans, just for anyone after lockdown who’s needing treatment.
Thank you for your helpful reply. I have been reading up on endometriosis, cysts, pouch of Douglas and laparoscopy the past few days. The problem is that there is so much information out there!
Could I ask why you recommend a specialist that can do excision surgery rather than laser during my laparoscopy? Am I right in thinking that the laser option would burn the affected tissue away but an excision would remove it completely?
I am definitely going to look into going privately for a diagnosis. The only thing stopping me is that I've been told that sometimes the NHS will excise any tissues they find there and then during a diagnostic laparoscopy, thereby meaning only one surgery? Do you know if this is correct?
Apologies for all of the questions! Thank you so much for your time. I hope you are well xxx
hi- up late as well.. so take a look here bsge.org.uk/centre/ you need to get referred to one of these, there are centres in the UK.
The reason for specialist is simply due to general surgeons are gynaecology based and will know their way around the ovaries, womb etc.. the specialist as they do this all day will be able to discover and work with anything more complex with teams involved so bowel, bladder.. all areas it can spread to.
Also as you mentioned, excision has a much higher rate of successful outcome, It’s know as the gold standard of surgery, it’s been researched and shown that laser can form scar tissue that allows the endo to grow back, meaning multiple surgeries.
So if you can start the journey, making sure you are referred to the specialist in your area, and not just put through regular gynaecologist system, you’ll be in a good place!
Nancy’s nook - Facebook
Dr Andrew cook, great book on diet for endo
Instagram search #endo #endowarriors etc there is a massive community and lots of info.
You have been so kind and helpful, thank you so much. I am actually lucky enough to be on a health insurance scheme with my workplace, and am entitled to up to £250 for diagnostic scans and tests. I am considering going private for a consult so I can discuss these findings and hopefully speed up the process a bit. I have also joined Nancy's Nook on Facebook and will look up the diet book! Your help has been invaluable thank you so much xxx
I'm so sorry to hear what you're going through, and I can relate. After years of painful periods etc I have just been diagnosed (via ultrasound and MRI) with bilateral large endometriomas. Surgery was scheduled for March to drain/remove them and see where else endo is, but obviously coronavirus has pushed everything back. Stay strong. This year has been horrid for everyone, and on a personal level a total shocker - of course any new medical discovery (let alone one like this) is scary. I'm now trying to take it easy and wait for a new appointment, and all I can recommend is you do as much reading as you can on the condition and take comfort in knowing you aren't alone! Lots of lovely people on here who can give you advice. Take care.
Thank you for your reply and I'm so sorry to hear about your situation. I hope your surgery will be rescheduled as soon as possible so you can hopefully find some relief. I've been doing a lot of reading and I am considering going for a private consultation. This forum has been brilliant, you are all strong and lovely people. Fingers crossed for you xxx
No problem at all, and thanks for your kind words. Just as a quick heads up - I think most private consultations are now being done over the phone/remotely as many private practices are also on hold right now. But you might have a quicker response than through the NHS. Whatever you choose, best of luck and let us know how you get on!
Thank you so much. You're absolutely right - just been quoted £500 for a skype consult to discuss the ultrasound I had on the NHS 😳 I think I'll just have to wait! Xx
Let us know how you get on, and amazing I’d take full advantage of private care if you can. We are all here supporting each other all have different advice and have been on different journeys but we all want the same thing and that’s to be understood and listened too.. x
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