Endometriosis UK
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Endometriosis or not?

Hello, this is my first post, and I was wondering if anyone had a similar experience to me, and if anyone can offer any advice.

About three years ago (Feb 2015) I first started experiencing really bad pain in my pelvic region — basically where you get period pains. It came on relatively suddenly, and after a day or so I had pain so bad I almost passed out. I visited my doctor at the time, and he ran some tests and said it was probably a muscular problem. Over the next year and a half, I would periodically (haha) get these intense pains, that could be slightly relieved with heat, and were made worse by moving around/physical activity. Its probably worth mentioning here that I have been taking cerelle (the mini-pill) since 2012, and after a year or so of light bleeding on my period, they stopped altogether. So basically, at the time I started feeling the pain, I wasn’t having bleeding on my period. So whilst I was pretty sure the intense pain lined up with ‘that time of the month’ I can’t say I was 100%.

In June 2016, I was having the pain regularly and badly enough to go to the doctors again. I had an external ultra-sound which came back all clear, and it was kind of left at that.

Around late April, early May 2017, the pain came on again, as it had been doing even month or so, and it basically hasn’t stopped since. I saw a gynaecologist in June, and had a laparoscopy in July — which came back with no signs of endometriosis. I was referred to a gastroenterologist and have had more ultrasounds, so many blood tests, a ct scan, and a colonoscopy — all to be told that I’m basically in perfect health. The last specialist I saw said I have IBS, despite me having no bowel symptoms.

I decided to do some tests for myself, and I came off my pill shortly before christmas, just to see whether my lack of periods was a symptom, or a side effect of the pill. I had a heavy period, with a lot of very dark brown blood (sorry if tmi) and was in extra pain than I have been experiencing since early 2017.

I’m getting kind of desperate, because pain killers don’t relieve the pain at all, and I’ve not been able to work since May, which is causing me stress and anxiety. I use a hot water bottle and a TENS machine, which work while I use them, but isn't feasible for day to day life. I feel the pain in my uterus/ovaries area, but if often spreads down my legs, and into my back. I struggle to stand for more than five minutes, and can’t walk even down the road most days. There’s perhaps 3-4 days out of every month where its not as bad, but on some days there’s nothing I can do to make it go away.

Thank you for reading this far, I would be very grateful for any advice, or to know of anyone else has had this kind of experience. Also thank you for letting me get all this off my chest!

9 Replies
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Hello. I’m sorry to hear how much pain you are in. I’m not a doctor but it sounds a lot like Endo. Can you be referred to an endometriosis specialist for a second opinion? Someone well known for their expertise? Have they ruled out other things? No more tests they can do? Not being able to work is not normal. I would just keep pushing for tests and try to get someone with you to appointments that can fight your corner. I’m sorry I don’t have better advice than that. I hope things improve for you xx

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Thank you so much for replying! I'm on a waiting list for a pain clinic now, and hoping they will be able to help me out...

Thank you! xx

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I hope so too! I recommend mindfulness for pain. Helped me so much! Take care x

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M sufferning same

And my gynecologist said that its only a midcyle or ovolution pain

My scan and ultrasounds are normal

Dr behved me so badly and said to my mother ingno her leave her in a room there is nothing

But my God kniw so well m realy fedup now

No one can help me

I also stop my checkup 😢😢

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Hey! Your story seems pretty much identical to mine!

Did you see a general gynae for your lap in July? I don’t know if you’ve seen any of my posts but my issues started like yours slowly at certain times of the month but then all of a sudden got much worse and was rushed to hospital thinking appendicitis but it turned out to be a bust cyst. Since then my pains got so much worse so quickly and saw a general gynae and had a lap with him in august which showed nothing. Since then I have had a lap with a specialist and he found and removed endo! So, if the person who did your lap was a general gynaecologist I would say it’s probably likely they missed it. Definitely ask to be referred to see an endo specialist (at a BSGE centre) and see what they say but it definitely sounds like endo! Good luck and I hope you get some answers soon!xx

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Thank you so much for replying! I've mentioned to my doctors a few times, asking about whether it's possible they missed signs of endo during the lap, but they just kind of looked confused, and didn't give me an answer :( On a waiting list for a pain clinic now so fingers crossed.

Thank you xx

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It’s ok. Well my doctor didn’t know much about it either but when I went in and said I’d been told on here it could have been missed he went away and did some research and even went on a course about pelvic pain and the next time I saw him he said I was right and that a general gynaecologist could miss endo. If I were you I would definitely go back to your GP and say you’ve been told on here it could have been missed and you’re entitled to a second opinion. I don’t mean to be negative but I once asked to be referred to a pain clinic but my GP said that would be the last resort as it would be accepting there’s nothing that can be done medically to help but that may not be the case if the gynaecologist possibly missed it. Just something to think about because I’ve been told the longer it’s left the worse it can get if it’s not treated xx

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This sounds a lot like my situation; currently on a pill which makes my cycle 3 months long and I only get a week of relief! One thing I can say is it can be bowel issues even with no bowel symptoms, as all the different doctors I saw told me it was bowel related when I was pointing to a spot round about womb/ovaries. My lap came back clear and I find it suspicious to have literally all the symptoms as individual things (my womb is tilted back which is common but can cause heavy periods and a lot of the pain I experience).

I also looked into it being pelvic floor pain and found this to be a huge cause. Like you I'm looking at coming off the pill after a negative lap and hoping this improves some of the symptoms as my body is no longer trying to hold off the period. Might be worth asking about a scan or doing your own 'research' to rule out bowel/pelvic floor pain and go back with what you've changed/found to make them listen! x

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Thanks for your reply! One doctor did tell me my uterus was tipped back or something, so maybe I'll have to look into that!

Thank you! xx

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