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Endometriosis UK
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I give up! i think its endometriosis!

my pervious posts I've been talking about all this and wondering what is going on. i suffer with a chronic bladder infection and i see a harley st specialist however this just feels like period pain.

after back and forth to my GP, a CT scan which showed ovary fluid, negative bloods, negative ultrasound I'm still here and I'm still in pain. Ive had constant pelvic and ovary area pain since late June, my GP isn't referring me to a gyro because she believed it was bowel related cos i said I'm consptiated.. my period started today and the pain is really bad in my legs, hips, lower back everywhere. Im just so sick of been fobbed off today I left my GP office with fybogel stuff for IBS! its so frustrating. she thinks i have celiac diease so i went to boots and had a test done myself - it was negative!

I'm looking at going private as I'm so sick of this treatment from my GP saying they didn't want to refer me as a lap can cause other issues with my periods are killing me!

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That's terrible, particularly with evidence of cyclical behaviour and the NICE guidelines just out.

I struggled just like you with lots of seemingly non gynae issues relating to bladder, back and bowel which is why it took me decades to get diagnosed.

Big hugs.

I would definitely go private if youcan afford to. Even if you were referred general gynae can be hit and miss. You need to get onto a BSGE Endo centres list, especially with possible bladder and bowel involvement.

Thinking of you x

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It really does sound like it. There are specialist treatment centres that you can be referred to, check your waiting times. Private treatment will be a lot quicker (not always better, it really does depend from consultant to consultant) and of course more expensive.

It takes a long time for most to get diagnosed, ten years in my case.

I hope you get the treatment you need soon. Look after yourself.

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In agony with my period last night I've gone back on the pill which I hope can give me some relief until I get resolved

I've Bwen like this for 4 months which I know is not long considering some go on for years

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I kinda hope it is and nothing like cancer. my pelvic ultrasound on my ovary was normal they couldn't see anything and my ovaries looked really clear. all my blood work was normal. Ive got a private CA125 blood tests to do on monday to check for ovarian cancer levels and endo levels. should get those result by wednesday. Ive got an appointment at spire on tuesday with a gynocologist to finally talk about whats happening. i can't believe this has been happening since june.

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You haven't got cancer you are just going through a very shitty process until you get a diagnosis.

You need a specialist so push for a referral to a specialist centre. There are some great drs out there and you will find one. I've had similar issues, I got to the point I saw 7 drs in about 6 months until I found the right one, this wasn't in the UK but in a major city of what was supposed to be medical excellence. One of them prescribed me so many painkillers that the pharmacist was concerned!

The celiac thing is interesting. I got tested and it came up with mild intolerance for wheat and a load of other stuff. But not celiac. I think it's because endo is hormonal and hormones can cause changes in your digestion plus if you have endo near your bowel it can cause problems. (And if you look at how it's all arranged in there we have loads of organs squashed in very close together.)

My advice now is you need to collect yourself difficult as it is. You will want to talk about how upset you are feeling etc. But you will only get 20/30 mins appointment time. Write a list of symptoms and a short list of questions you want answered.Take notes/if you are likely to get upset, take friend/partner or parent.

They can't diagnose you on the spot, they will send you for an ultrasound or MRI, this won't necessarily show much up. You have to push for a laprascopic surgery. You don't want too many surgeries because it creates scar tissue try and get a surgery where they cut it out not laser as it isn't as effective not just a surgery where they diagnose. You need a good surgeon. A good surgeon will believe you and give you solutions. I've only met one so far - Google it.

Short-term get your periods stopped I took Yasmin for years and tri-cycled so only had four periods a year, visanne works for endo but not in UK yet. They also have prostap injections, these can cause hot flushes etc but shut it all down for a while.

I'm really sorry you are having a crap time with it. So many woman have dealt with this misdiagnosed. Lena Dunham and countless others have written blogs etc about it. Reading as much as you can on here can help. You aren't alone and you will feel better soon xx

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I hope it isn’t.

Only thing they could see on the ct was ovary Fluid which has gone on the ultrasound.

Thing is I never had painful periods before never and suddenly I have them now. I mean all of it does scream endo but I want everything ruled out.

As my celiac test came back neg for me I guess It’s another thing ruled out.

That’s a good idea writing everything down for my appointmrnt on Tuesday it’s jyst amazing how quick you can see a gyno when you go private and pay money :(

But I will push all I can for a lap as I know that’s the next process

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I'm so sorry you are going through this, definitely go private if you can or alternatively wrote to PALS (Nhs complaints) and tell them you don't think you have been investigated properly, ask for a MRI scan of pelvis with contract dye, it's a more effective method of seeing endo but still not a guarentee. Ultrasound is completely useless and can not see endo! Also ask to be referred to an endo specialist and ask for laparoscopy (it's the only way know for sure if you do have it). You can see your nearest endo centre here - bsge.org.uk/centre/

I have complained to pals in the past and it really go the ball moving, but if you can go privately then do it, it's so frustrating when you don't have answers xxx

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I feel for you, i am in the exact same position, except that it was a gyno who told me that my pains are due to constipation and sent me home with a prescription for constipation sachets however i am seeing her again in 3 months to see how I get on! It is so frustrating, I am also looking at the private route! Don't give up, this is not in our head as some doctors might want to make us believe!! xx

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I was the same, given fybgel at the GP yet my periods are painful and weird and i have constant pelvic pain :(

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Hi, please do not give up, I have bladder endo and it did not show up on ultrasounds, in blood tests or other tests. Ask for a referral to a bsge centre and get a Mri done. I hope you get some answers soon.

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Ive convinced myself i have ovarian cancer and I'm really scared.. my ultrasound and CT was fine with no masses but I'm still really scared :(

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Does bladder endo show up in a laparoscopy? I had a lap and they didn’t find endo. But the pain feels like the pressure you get with cystitis - without the burning when you wee. I’m trying to work out if it’s mirena coil related. Doctors don’t know what to suggest now.

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What’s a bsge Centre?

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Think they see outside bladder endometriosis on a lap don’t they? I’m waiting for my lap prosecute appointment to come through

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I was the same. Same symptoms as you describe. Told it was IBS, given fybogel and antispasmodics. I saw a different doctor and was eventually referred to gyne after soooo long battling with pain. Diagnostic laparoscopy found endometriosis. Don't give up, keep battling with them! X

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I was given fybogel last week. I've had a CT done, normal ultrasound and bloods and nothing has come up. I'm very concerned about whats going on. I have a appointment on tuesday with a priviate gyno at spire. Ive been consptiated but i have been taking lots of co-codomol . just scared incase it is something worse than endometriosis.. just want answers :(

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Hi Kate oh yes i have been there with the fybogel! How ridiculous i mean do they even know one end from the other i wonder.

My last flare up felt very much like a bladder / water infection and i had pelvic pain ( severe) for 2 weeks every month.

Im not an expert but your symptoms sound like mine . If you can afford it - go private.

In the mean time things that help me are hot water bottles for the back pain , feet up on pillows for the leg pain and a steady dosage of naproxen for everything else. X

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Hi this post is super old since then I had a diagnostic lap to diagnos stage 4 endo then 6 months of zolodex and then another lap to remove the stage 4 8 weeks ago! So much happens so fast!!

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