My Story for advice!

Hi all,

Sorry for the length of post in advance :).

My symptoms started off with what doctors thought was a uti 5 yrs ago. After numerous anti-biotics over the space of a year the constant discomfort in my pelvis area didn't go away. I was then sent for a cystoscopy which thankfully came back clear.

I then however started getting other strange symptoms - periods slightly more painful (although I am never in excruciating pain thankfully), some blood clots with every period and odd pink/brown spotting at the start and end of periods. The discomfort in my pelvis was constant not cyclic. I had smear tests (normal), ultrasound scan of whole abdomen (normal) and a CA125 blood test (also normal).

I had an appointment with an endo specialist who advised that as my pain was not excruciating that I should try and get pregnant or try the mini pill.

I decided against the mini pill as did want to try and get pregnant.... I therefore coped with the discomfort but then started getting lower back ache - again this was not excruciating but a constant discomfort.

Luckily within a few months of trying I got pregnant and the whole pregnancy was great - totally symptom free.... lovely!!!

Three months post pregnancy the pelvic pain and back ache came back. I tried the mini pill for a 4 month period which helped initially but I then started spotting continuously and getting cramps. I have now been put on a combined pill which has eased all discomfort and made my periods manageable (I am try-cycling). Not many clots or any brown spotting anymore yay!

However I do now have some other symptoms - constipation, slight discomfort on emptying bowels and the pain that is bothering me the most.... heavy burning sternum pain which radiates to my back and sometimes ribs. Ended up in A&E as chest pain was so bad I thought I was having a problem with my heart. Had an ECG which was fine and was told that it was acid reflux. I also get what feels like flutters in my chest and slight breathlessness on occasion - scary!

Does anyone get upper body pain too? I don't know if this is an endo symptom or if it is indeed really bad acid reflux. The chest pain is not cyclic, I never seem to get it when I have my period but would it not ease with the pill if it was endo related? Just worried that I may have endo on my diaphragm or lungs or elsewhere. I am on PPI's which at the moment aren't helping and it is so painful..... just not convinced it's acid related.

I also have an appointment with an endo specialist again on the 9th of April but feel if it wasn't for the upper body pain I wouldn't be going as I have the pelvic/back discomfort under control and I am super scared at the idea of a lap!!!

Any thoughts?


4 Replies

  • Hi, unfortunately the only way to no what is going on and to get a clearer diagnosis is a laparoscopy, we can cover over some of the symptoms but that's not really helping our future.

    I personally opted for a lap to diagnose for sure, I had it on sat and they confirmed endo and adenomyosis,

    Good luck xxx

  • Hi Hun I'm sorry to hear you are suffering do much. I get pain in my upper back and get out of breath when trying to cope with the chronic pain. Your pain the could be anxiousness. Have you had an X-ray of your chest? Xx

  • Hi there

    I have endo on my bladder. First gynae I saw told me my pain wasn't cyclical enough to be endo ,because my pain is now constant. She also said that people with endo don't describe a burning pain like I did.

    My endo often makes my bladder sore and I feel like I have a uti. This is in addition to the burning pain I have on bladder.

    I also have upper body pain, which is on my back just where my ribs end. Sometimes it radiates down or around my side to the front.

    I disregarded what that first gynae said and pushed for lap,which is how they found bladder endo. My kidney pain is still under investigation but they have ruled out kidney infection,kidney stones,gall stones and my liver was checked too. GP thinks it's referred pain from bladder endo and new gynae not sure.

    Whatever it is I'm on morphine,tramadol,naproxin and amytryptaline for GP said endo can cause excruciating pain especially when bowel is affected.Best thing to do is get in the system and start getting diagnostic tests done. However remember no one can rule out endo on the basis of an ultrasound. The lap is best for finding endo. My endo didn't show up in ultrasound but was found in lap.


  • Thanks all for replying... I think just speaking about it is a relief!

    I know in my mind that I need to have a lap done to diagnose and find out extent. I have put it off for so long but know just being formally diagnosed would take a weight off.

    There is definitely an element of anxiety which could be contributing to my pain.... I have had quite severe health anxiety since this all started. Think I have diagnosed myself with everything along the way and feel like my life is revolving around how I feel. No I haven't had a chest X-ray but think it will be something I push for. I have been to my doctor countless times and every time they advise all the symptoms are acid reflux. I did ask if this could be endo related at all but was told 'no'. But I will speak to the endo specialist about everything in April.

    I will let you know how my appointment goes.

    Thanks again. xx

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