Treating PCOS & Endometriosis: Hi I have... - Endometriosis UK

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Treating PCOS & Endometriosis

Dee_mcnee profile image
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Hi

I have been reading over some woman's experiences and i completely empathize the vast array of differences that endometriosis has for everyone.

I had my first period late at age 14. I have always had irregularities with my period and more frequent bleeds then the common "30 day cycle". I grew up thinking period pain was normal, and throwing up from period pain was just my body overreacting to the pain. After a year of this i went on the pill (monofeme), which gave me a predictable cycle.

At some point around 18 i had an ultrasound due to no periods for months (pregnancy was ruled out). The ultrasound was only external for some reason, but it all came back with nothing. I eventually got my period and stayed on the pill.

By age 21 i was still taking the same pill but i started to get irregular painful periods. Whilist taking the same pill i was bleeding for 10/14 days inbetween periods (very roughly bleeding every 2 weeks give or take a 10 day radius). After a 14 day bleed one day off to another 14 day bleed i decided to go to the doctor. My doctor got me to triale more pills for many months with the same results and more alarming side effects like migraines, thrush and finally anemia (from the mini pill).

I went on the deprovera at age 22, and was told that i probably had endo. I still had random stabing pains in my ovaries but it was so much less then before so the pain was dismissed.

I was on depo for years until i moved city and was told that i had been on depo for to long (5 years) and i had to go off it. Suprise i had no periods for 6 months, but then it all came at once, heavy periods, 10/14 day bleeds a few days off then back to 10/14 days again, back aches, muscle aches, throwing up from pain. It got progressively worse while i was going up the medical chain to be refered to a specialist. I was spending 2 days a week in pain, movement caused more pain and heavier bleeding.

My next ultra sound (last year) showed PCOS and a cyst. I was booked in for surgery with the specalist but the cyst ruptured before the procedure so it was called off and put down to PCOS.

I got the mirena because of my history with the pill. I had lighter periods but still the irregular long bleeds, yes this can be from the mirena but i was still having immeasurable pain and 2 days in bed a week.

I pushed for a laparoscopy and a year later had one that revealed stage 2 endo. The endo has not gone through my ovaries but instead gone through my POD and rectum. The biopsy came back showing history of inflammation and calcite tissue from endo.

After surgery pain comes and goes, in 8 weeks i have bleed just as many days as i have not bleed (it all smells and looks different). My first "bleed" after surgery i went to hospital due to pain and blood in my stole but i just got told i was ovulating. Has anyone else experienced these types of regular bouts of pain, pain with no bleeding? How did you manage it ? (Im have been trialing diets, have been off dairy for 4 years).

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Dee_mcnee
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Shelly085 profile image
Shelly085

Hi I've been suffering from endo for 15 yrs now tried all the pills, Mirena an nothing has worked for me. I've had numerous laps had fibroids removed had cysts couple of times, infact I've been told I have numerous small cysts on my ovaries now, I've been suffering from pain constantly through the month,vomiting, shivers and fainting due to it, been taken to a&e few times in the last couple of months an just get told it's all down to my endo there is nothing they can do for me they say it must just be inflamed. I've found the best painkillers that work for me are the voltoral 100mg suppositories taken with paracetamol or co-codamol, the suppositories ain't nice to take but they do help with my pain an u can only take them every 17 hrs but are worth it, I get them from my gyno dr. I really think they need to be working on a cure for it as there is to many ppl suffering with it now an it really does effect your life.

Dee_mcnee profile image
Dee_mcnee

Hi kiwi medic thaks for your reply and advice. Im glad that you have managed yours it makes me hopeful for all of us. Quick question have you cut coffee & alchole out as well ?

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