Endometriosis UK
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Could it be adenomyosis?

This is probably going to very long but just wanted some advice. Ive suffered from endo since I was 17 im now 31. I have had it lasered away and been on all types of medication. I recently had another laparoscopy as my symptoms were back, the lap didn't show any endo but dr said it could be hiding as once you have been diagnosed with endo that never goes away. The symptoms I have are extremely heavy periods, constant pelvicpain that travels down my thighs, ive suffered from palpitations since my 2nd pregnancy, test have shown high heart rate but no reason for it, lower back pain, frequent urine kidney inf, blood in urine, painful intercourse, tiredness. Ive had ultrasounds,a ct scan of my kidneys, sigmoidoscopy and laparoscopy and nothing is shown up. They removed a cyst from my ovary on the last lap I had in Feb. Im also under the general surgeon who thinks the pain is coming from my section scar, I just don't know what to think or believe anymore. All I know is I have all these symptoms and no reason for them. After reading about Adenomyosis on here, all the symptoms are pointing to this but not sure what to do now. Feel as if the drs look at me like im mad. Sorry for it being so long.

4 Replies

Sounds like typical endo symptoms to me. I think adenomyosis is where you feel like you are having full blown labour pains. X



First of all ask gp to check for ecoli in your urine. They dont routinely check for it but blood in urine is typical symptom and needs a certain antibiotic, it can be really painful.

Were your ops with endo specialists? Did they check for wndo on bladder/kidneys etc?

I have very similar symptoms and my gynae suspects adeno too. Frustratingly not much they can do about it and rarely gets confirmed until you've had a hysterectomy.

Have the drs tried a drug to block nerve impulses such as amytriptilin to see if that has any effect?

Good luckxxx


My story is quite similar to yours....diagnosed at 17, lots of surgery & mess over the years etc!

I had a partial hysterectomy last year where the confirmed Adeno and I now know their previous note, in one of surgery reports, of an enlarged uterus was a definite indicator so my advice would be to ask if they noticed that during your last lap!

The pain with my last periods )before hyst) was almost unbearable!

Good luck :-) X


Oh and if you have completed your family then worth considering a TCRE to sort the heavy bleeding. Know how much that can drag you down too as mine were extremely heavy and would go on for weeks at a time until I required emergency blood transfusions but a TCRE helped X


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