Endometriosis UK
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I just want to know if I have endo or not!

Saw the gynae and he said the symptoms fit with gynae, but they could also fit with other things. Having an MRI and just waiting for a date.

In the meantime, the ultrasound showed a cyst on one ovary. I don’t know whether this means endo is more likely, or maybe that the cyst is causing the issues?! I feel like I’m trying to second guess everything and it’s driving me mad! I just want to know if I have it or not!

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Hiya, I was told all along mine was a bowel problem until my gp reluctantly sent me for an ultrasound, it also showed one small cyst, so when I seen my gp again she said it was a ‘normal’ cyst and was part of my monthly cycle. I knew there was more to it. She referred me to gynae but I went private, gynae told me it was definitely gynae issue and not bowel. Last week I had my laparoscopy, they found endometriosis all over my pelvis. So really if it wasn’t for that cyst, I might not know today. So don’t be thinking this is all in your head, you know when something is not right x

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Thanks. I have coeliacs so they’ve always looked at it from a Gastro point of view. And only now gynae because I insisted and have paid to go private. Out of interest, did you have an mri and if so did anything show?

However horrible it is, I bet you feel relieved to know what it is and to finally be believed?

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Ah right ok, well I definitely think going private was best, I live in NI and at the time it was a year and half waiting list for the gynae!

No I wasn’t offered an mri, not yet anyway, when I seen the gynae and she done the internal ultrasound she insisted I had the laparoscopy. But hopefully the mri shows something for you.

Yes it’s feels almost bittersweet, so relieved to know it wasn’t in my head but also to think there’s a hard road ahead, thinking will I be able to have kids etc.. but it’s definitely a relief to know x

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Yes I bet! Crickey a year and a half is so long! Fingers crossed for everything in the future and thank you so much for your advice! X

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I was passed from pillar to post with issues last time I had a flare. I was told it was bowel, then kidney, then bowel, then adenomyosis, lots of times I was told it was mental, then I was told I just had to live with it. A throwaway comment by an overworked A&E Dr suggested endo and I found my way here then to a BSGE Centre. An ultrasound there showed pelvic congestion and the Dr decided on a lap to remove that vein, ovary and cyst. It was an utter relief to get a diagnosis. I had honestly started to think I was going to be in pain forever and that I was going mad. The lap then found endo, adhesions and ovarian cysts. Finally I felt justified that I was ill and people wouldn't see me as a hysteric who was always skiving. I was in constant pain for a whole year before surgery taking shedloads of meds and it took a massive toll phsyically and mentally to be ill for so long.

A previous flare saw me see a gynae who removed adhesions which he thought had just randomly appeared. BSGE said it was probably endo related but the gynae didn't have the knowledge to see it.

I don't get "typical" box ticking period issues. I start with odd ridiculous pains. Looking back I have had weeks of this throughout my adult life which has been put down to burst cysts, grumbling appendix and stress. However I am on the 3rd go around where it hasn't gone away but has built to pain all the time with racking spasms. I get bowel issues when my whole insides spasm. Sucks to be back on the merry-go-round again as I have had to stop looking for a new job because I know I need the sick leave I have accrued with my service. I also know things will get worse before they get better. However, I got referred straight back to my Consultant and I know I can do this as it's been done before.

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Sorry to hear you’ve had such a difficult time of it. What is bsge?

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BSGE is an endometriosis specialist centre. The NHS system allows you to request that your GP refers you to see one of these where the Drs are the most trained in dealing with endo. If you have bowel involvement you should automatically be referred to one but this does not always happen. When I asked for a referral my GP was unaware the centre existed and was quite grateful to learn about it. Find you nearest from this link bsge.org.uk/centre/

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The waiting game is awful. I spent years trying to figure out what was wrong with me and it consumed me and took what little energy I had. It's so difficult to get the balance right, you don't want to be too passive and not know enough but also you don't want it to be your every thought and to define you. I think I've got it wrong a lot over the last 4 years since I've been really ill. At first I was obsessed with trying to get a diagnosis of some sort and find a 'cure'. Every blood test result, I was googling and trying to read up everything, it was ridiculous. Everyday, after so many tests that all came back clear (the last of which was a clear laporoscopy) I then gave up looking for an answer and accepted that it wasn't going to be like that. Instead I accepted how I felt and looked for ways to cope. I got lots of non medical help like reflexology, reiki, acupuncture, chiropractor, meditation, yoga etc. All of which benefited me. I dismissed loads of issues but eventually went back to my Dr when hip and back pain started to really trouble me. I've recently had an mri which has confirmed severe endometriosis, 2 years after my all clear. I think I went from one extreme of obsessing to the other extreme of completely rejecting a medical approach. I think the answer lies somewhere in the middle which I'm hoping to get this time round. I've now got a 7 week wait until I see a gynae to find out what the mri results mean, what this diagnosis actually means and what my options are. Some days I'm really impatient and try to figure out out but I'm really trying to just play it day by day, know I've done all I can do at the moment and right now, there's no action I need to take so I just need to hide my time & look after myself.

It's so hard! The thing I keep using is just reminding myself what the facts are and what's happening right now. It usually stops my head running away with the "what ifs".

Hopefully you won't need to wait too long. We're you given an idea of wait time?

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Oh god I completely agree!! I am terrible for googling and trying to read into things and diagnose what it is and it’s driven me absolutely mad! But I also feel like, in a way, I have to be like that because the gp’s never seem to suggest anything. I had to suggest gynae and go and see them privately and when I saw them, they said of course gynae is a consideration and why had I never seen them before?! So frustrating!

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I’ve had chronic abdominal pain for over 4 years and I’ve been passed from general surgery to gynae back and forth constantly I had one ovarian cyst that gynae called a “normal” cyst. I stopped having investigations done 3 years ago because they both said they couldn’t help basically I got my GP to refer me to both again last year so I’ve had an MRI, colonoscopy and cystoscopy all with nothing showing. I’m now on the waiting list for a laparoscopy

I have been told that it’s the only way to get diagnosed properly is if you get one. You really need to fight for yourself with the doctors - if you don’t they’ll just do nothing.

If the cyst is causing the pain then it should go when it gets smaller or get worse if it gets bigger

If it’s still there after the cyst goes (like me) then it’s not the cyst and it’s something else

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Thanks, that’s really helpful to know xx

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