Endometriosis UK
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Left sided severe abdominal pain ! What could it be ?!

Hi everyone -

I feel I need to write down my problem as I’m not getting any help from the doctors

I feel hopeless-

I’m having this dull sharp pain since February and I couldn’t finish my university training because of pain .

I just don’t get taken seriously no matter how much I pay ...I have seen 6 gynaecologist- 4 misdiagnosed me..

I was on morphine , steroids and different NSDAs .

I ended up in theA&E MANY TIMES and nothing ..all I been told to walk home In so much pain .

I have had 2 coloscopies and I also had a Ct scan and 2 MRI - nothing chronic.

Since April I have this burning sensation down there- if I take NSDAs eg naproxen ibuprofen it helps with the pain management and the burning feeling ‘ goes away ‘ ..

Im in a big dilemma .. I tried tried all my best I spent all my money on private doctors in Hungary ..

(In the U.K. I CANT AFFORD TO SEE A doctor and I can’t rely on the nhs as it. Is all about waiting weeks for an appointment .)

Who is responsible for my health? My GP SAID ; ‘I’m lost !’ I don’t want to her this again so I will fight !- I want my health back !

I even tried acupuncture!

I just can’t tolarate the pain anymore and I’m really worried as my career is falling apart.

Please advise me !-

Could it be endometriosis? ...

Or ovaritis ?

Adnexitis ?...

28 Replies
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Have you had a Transvaginal Ultrasound scan?

Do you have any bowel movement difficulties? Has anyone mentioned having Barium Enema xray investigations?

Have you applied for a copy of your Hospital records (scan reports, blood test results etc)?

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Is the pain constant 24 /7 or does it come after eating or drinking

have you ever had any operations in your life

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Thank you for your question - no I have never had an operation . But more likely now I’m going to have ..

Yes the pain is constant - sometimes radiates to the right side and my left back ..

I’m assuming because it’s is a chronic pain .

The burning sensation goes if I take 4-5 naproxen !!! -

Obviously I have the burning sensation because of the pain .

My mood is really low and I’m exhausted all the time.. I did not exercise for 4 months .....;( really sad

I just wanna remember what is like to be healthy!

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I can’t help over the lack of help you’ve had with the doctors; it’s appalling.

Unfortunately it is a known fact that it takes women many years of suffering to get a diagnosis of endometriosis.

I get the exactly the type of pain you are describing and when it became chronic that I was offered a laparoscopy; my pain is caused by endometriosis. It is on my POD uterosacral and rectum. I’m currently awaiting my third lap in under 2 weeks; will be my third one in 13 months. I can’t help but wonder if it had been diagnosed earlier if it would’ve got so bad ☹️I had to endure 6 years of infertility and 3 years of menstrual issues how it didn’t get picked up on those

never two links I do not know🤦🏽‍♀️ my endo never showed up on any ultrasounds.

Good luck I really hope you can get a doctor to take it seriously xoxo

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Thank you for your message !

Omg the third laparoscopy??? - how are you feeling ? How can you ?.... I hope you have some. Support !

Look I can’t take this anymore!- all I want is to be healthy and I want this nightmare to be over ..

You are absolutely right - ultrasound can not show you the endometriosis. I wonder if you would be able to see on an MRI test .

Although I had two and nothing !!

Sorry but are you telling me that you have the pain on the left side as well ?

I’m just trying to find out if you have left iliac f pain it’s could be a result of an endometriosis?

Oh I feel this heaviness in my lower abdomen anyway it is hard to ‘ locate ‘ the plain ...

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Yes I am. My endo is on my POD , uterosacral and is all over my rectum. An endo specialist is doing this surgery but if it is found to be too deep I will have to have surgery with a colorectal specialist; it is insane no doctor can assess it without putting me through another operation which maybe be in vain 🤦🏽‍♀️All I can do is hope is isn’t deep 👍 I have lots of support thank you 🙂

If I was you I’d be pushing for a laparoscopy because it does sound like endometriosis to me and it can only be diagnosed with a laparoscopy. It doesn’t always on even an MRI.

Write all your symptoms down and if you record every time you have pain in a diary ; the location of the pain, the type of pain ie sharp dull etc, and length of time it lasts, and from that information the doctors can see what is going on. 👍

Keep us all posted how you get on xoxo

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Thank you so much for your advise !- but as you know living with this pain is horrible

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Dear Jess ,

May I ask you if your CRP level was high ?

My is increased up to 17 so there is an inflammation...

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I never had any bloods done sorry. Definitely think it’s worth mentioning to a specialist tho xoxo

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I've had it for 3 years due to so many operations.its scar tissue& nerve damage with me.ive had every test & tablets & nothing works.i do hope you fine a solution.x

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Thank you so so much for your email .

So what will happen to you ? What is your solution ? All the best

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I've been to private doctors & tried everything in the book sofi. I just live with it but it's hard. Really brings me down. I want quality of life NOT quantity!😥😥

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Ok may I ask you if have been diagnosed now ? Where is your pain extant located ?

Do you have the surgery ?

So what is the situation now ?

I’m literary flying back to my country now ! As I can’t afford U.K. doctors !

Is there anything I can help with ?

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I've got the same left side pain I've had a hysterectomy and some endo found ad removed but pain just keeps increasing . I've paid and seen NHS drs but no change in original pain , on zoladex at the moment but still horrible pain and everything I eat comes straight through so skinny and tired now and my business is collapsing . Sorry to hear more ladies same problems really feel for you all

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How is your crp level ? Did you have a blood test ??

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I had predominantly left sided abdominal pain. Turned out I had pelvic congestion syndrome (varicose vein linked to my ovary and tube), adhesions which were pulling my bowel and endometriosis in my Pouch of Douglas. Ask your GP for a referral to a BSGE Endometriosis Centre. I had seen lots of Drs and had lots of scans and only when I got to a specialist centre did they recognise the pelvic congestion on an ultrasound.

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Thank you so much for your help- may I ask you how did you get diagnosed ?- did you have a laparoscopy ?

Best wishes

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I saw lots of Drs before endo was suggested. I found this site and asked my GP to refer me to the endo centre who scanned and found congestion. I then had a lap. The vein, ovary and tube were removed as well as endo and adhesions.

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I’m really sorry to hear that ! So did you say that you had a scan ? What kind of scan ?

Ct mri?

I had them all ( privately ) as the nhs gynaecologist will never send you for a ct as it cost ‘ far tooo much ‘

Oh well what about my life ?!...

are you based in the U.K. ?

May I ask you if your pain was persistent?

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It was an ultrasound and transvaginal ultrasound that picked the pelvic congestion up. It lit up like a Christmas tree according to the specialist. I had been under general gynaecologists and none of them had seen this on any of the many ultrasounds I had. The bowel Dr did a barium enema and this did not show the adhesions causing problems nor it being out of line and the severe pain when I had the procedure did not flag anything with him as he thought I was a wimp. I had a CT scan looking for kidney stones and nothing showed up on that to give any indication of the pain I was in.

My pain was constant and left dominated. I always had a heavy feeling in my pelvis and then I was wracked with unbearable spasms. I was taken to A&E a few times when I maxed all my pain meds and they treated me like dirt and thought I was drug seeking. In the end my GP gave me a bottle of morphine so I wasn't further humiliated while waiting to see the specialist. I used this sparingly when things were awful and it took the pain to a level where I was able to not cry and just about move around.

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Omg ... I went throughout exactly the same !

Tomorrow I’m going to see a doctor again ..

My crp is very high . Could it be the sign of endometriosis?;(....

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My pain is caused by Endometriosis, and cysts that get bigger and rupture. I've learned this the hard way ... ending up in hospital to be told 'it's nothing' but they can see fluid which suggests a cyst may have burst. I was diagnosed with Endo after a lap, quite a few years back, but I suspect I now have additional pain from scar tissue, due to the surgery.

Can they not give you a pelvic scan to see if you have fluid/ cysts? I did have to pay private for my scan to be honest, and the surgery after getting nowhere with the NHS. Not knocking them, just saying they couldn't diagnose me and I was fed up of having crippling pain. I now just do my best to manage pain with Tramadol when I need to, but at least I have an idea what it is. I do hope you get some relief, answers soon. Wishing you all the best x

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Thank you so much for taking the time to read my ‘ story ‘

Well you are absolutely right . I pretty much have the same story as I do not believe to anyone anymore.

Well exactly I live in the U.K. I was doing my teacher training and I did not get anywhere with the nhs . I even changed my gp . Since April a I have seen many specialists!!!!

And the reality is you can die !!!!! If you believe in the nhs ! I was screaming because of the pain in the a and e and they completely ignored me ! I will never forget it - it was a trauma !

Everyone out there who is healthy I can only suggest that you have enough to afford private health care ! That’s the reality !

May I ask you on which side you had the pain ?

I am wishing you all the best and thank you for telling me your story !

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I always get pain on my left side. This was also the side they put the pods, or did the cuts for my surgery. I still have scars you can see.

I know. When the pain is severe it's severe and when you end up in A&E and even they can't do anything after hours you just want to give up. I am pleased I got a diagnosis. Sad that I had to pay for it. I still get pain most of the time now and I put it down to swelling, cysts, and that time of the month. I am also on the pill as well - to avoid the monthly bleed/ pain I used to have a week leading up to and during.

It can be completely debilitating. I did have to give up work to be honest. I did see a couple of NHS specialists. 1 told me to have a baby through COTS, and another told me to have everything inside removed... then added I would still prob get pain. Needless to say, I live with pain, but have learned to manage it better. It does seem if you can't go private with this you don't get any help or support at all. All the best x

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OMG how many answers I had so far ! THANK YOU VERY MUCH FOR EVERYONE .

I’m on the train to the airport - flying back home. And will visit a gynaecologist (again ) and will ask for a laparoscopy!

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Thank you so much for your question .

Yes I had internal examinations 3 times .. I just don’t believe to the doctors ! I have seen 6 gynaecologist 3 urologist and many more ..

they all say different things .-

Only one said that she thinks I have an endometriosis. ( she didn’t diagnose me ) ...

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Have u tried a womens health physio?

I have had all the same problems over 17 months paid thousands on private specialist every single one of them got it wrong and told me something different then the last!

I have ended up in A&E many times in pain and told nothing...

I have had colonoscopy, ct but they wont give me mri even though they found a mass in my pelvis in ultrasound and transvaginal ultrasound but they say “ oh there to expensive” we wont just give them out to anyone!! Even though i paid privately for most things not nhs!

Anyway i found a good womens health physio who went through my history and looked at my pelvis and groin and went to work internally and externally and over space of 3 months i slowly got better . I had adhesions from a injury( sports) stuck to pubis bone and a stuck scar tissue where i had lap for endo. My internal pelvic floor and my groin/stomach/and pelvis were all tight and inflammed after years of having a wonky pelvis and 17 month down line i would say i was 80% better.

So mayb try to find one. They are more hands on then a specialist or gp and they can see why u would b in pain in that area

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Thank you for the advise I’m just going to google one right now ...

I just got the blood results back from Hungary ... my CRP level is 17 so really high ...

Could it be a sign of endometriosis?..:(

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