Total Newbie, pco, but so many symptoms leading to poss endo aswel, but how to explain to Dr??

Hi All

Will give you a bit of info on me and hopefully some of you can relate to my symptoms, appologise in advance for long story lots been happening over past 10+yrs

IBS diagnosed 13/14yrs old (currently go every 3-5 days with no pain)

Started period age 15

Age 18 confirmed pseriosis due to stress

Age 20-21 horendous periods, very long, clots measuring over size of 50p coin.

Age 22 confimed mmc, couple of months after started getting pelvic pain, was refered for scan which detected PCO very bad especiallly over my left ovary but not big enough to operate on.

Refered to consulant to discuss pco and trying for another baby, was told by consultant that my period symptoms where consistant to having recurrant misscariages :(

Tests began to discuss ovalation, was told that I do not ovualate, would not be able to have kids naturally, was put on clomid to induce ovulation but dr didnt expect it to work. Within the first month i was pregnant, Prem baby at 34wks

Went back on combined pill after birth until ttc baby number two 20mths later, fell pregnant within 2 mths!!, consultant was baffled especially as cysts where everywhere on my ovaries.

Went into labour at 33 wks, but drs where able to slow labour to eventually stop thank god.

22 months later fell pregnant within 1 mth of comming off pill, 8wk scan was told by consultant and sonographer that my 3rd daughter was a miricle baby as my ovaries had more cysts than my 2nd pregnancy and thought by having children it had kick started my fertility?.

33wks pg slow rupture of membranes again, got as far as 39wks to be emergency induced.

Ever since daughter number 3 (3yrs ago) I get sharp pains up my bottom which Ive always put down to a very painfull birth that was all in my bottom, took me 3wks to recover.

Sex not that i have much time, but I do find it painfull in certain positions again put this down to having 3 kids but more to do with daughter number 3's birth. Also spotting ocasionally after sex.

2011 put on methatrexate for pseriosis (which has anti inflamitary ingrediants thats used for arthritus and cancer patients), due to horendous side effetcs etc, had to go on fool proof contraception which was asked to go on implant that ive had before, found it great, no periods. From summer 2012 started getting Ovalation pains every month which i have never had before even with pco, but I could manage with these.

November 2012 went on holls, didnt take methatrexate, and skin was fine, so decided to gradually come off them.

End of nov 2012 horendous ovulation pain lasting full day all on left ovary, it took a further week for this to settle down, spottng on and off that Ive never had before (unless ocasionally after sex). Also pain in left shin and calf throught the month

January 2013 decided that I couldnt cope with side effects of skin tablets, and as they are a last resort for my pseriosis hospitol is monitoring this. more ovulation pain and painfull period lasting 1wk.

Feb 14th 2013 had implant taken out as was in to much pain and irreguar bleeding I was finding this hard to cope with again. As i thought the implant was causing all my problems removing it seemed the best option, no contraception totally hormone free :)

March, ov pain and cramps lasting 2 weeks, saw dr for painkillers, internal examination and was told that i have a condition that during sex scar tissue from my births would bleed, never been so embaressed to be told that should have more gentle sex, what the hell!!, it has to be gentle as it's often painful and for no reason, so i was less than impressed with drs attitude. Dr wanted smear done, but it was t early, swabs came back fine, ultrasound scan I was sent for and as I hadnt heard anything back thought all was fine and pco was still same from internal scans that I had with daughter number 3. exactly 28 days after implant removal period, very pain full lasting 5 days.

April cycle 28 days again painfull ov, cramps exactly same as march

May started monitoring cycles on my phone, as I oticed alot of headaches, cramps etc between periods that Ive never had before. Cycle 31 days

June 2013, cycle 37 days so starting to increase in length. nearly every day theres pelvic pain, headaches etc On day 27 had sex on day 29 spotted for 3 days?? which i though was period but with no pain etc, then i wondered if it was poss implantation spotting (which Ive had with all daughters but this has always lasted 1 day) day 35 started getting pelvic and backk pain day 37 period, full blown pelvis and back pain absoultely horendous so much so i want to cry. Taken the usual feminax, parecetamol etc nothing works. Then thought about taking my tennis elbow anti inflamitory tablets which seem to work for 3 hours. Last night had heated blanket in bed on max to get some heat relief.

My cousin did a endimetriosis fundraiser on saturday and we got chatting about it, turns out my Mums mother had pco & endo, on my dads side 2 have endo, 3 have fertility issues!!!. The more I look at the symptoms the more I think how silly ive been not to think about endo when it know seems so apparent in my family?.

But what is more obvious is that i came off my skin tablets that have anti inflamitory ingrediets in them in January, came off implant in feb, and everything seems to have gotten worse since these times??.

I have drs apt tomorrow morning to discuss all of this, but i also queried ultrasound test results from march just out of curiosity, and low and behold there are no results, so still waiting for them to be forwarded to my dr - 3mths on!!.

does anyone have similar symptoms to me?, how did you approach drs?, did you ask for gynae referal as I have little faith in drs tbh!. Any advice would be great. Thank you for reading all about my story , know im off to read about all your stories hoping to get some answers.

Bek xxx

1 Reply

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  • I am a very different case to you as I was diagnosed with Endo aged 22 (9 years ago) but my problems also started with IBS symptoms and awful periods in my early teens. One of my main Endo symptoms has always been sharp stabbing pains up the bum, which turned out to be Endo in my pouch of Douglas - I don't have any children.

    Obviously I don't have all the info but nothing you've said suggests you were having recurrent miscarriages - my periods used to last 3 weeks and were heavy / with clots throughout. These are common Endo symptoms, and I think PCOS symptoms too so I'm not sure why you were told that but maybe theres more to it.

    The average time for Endo diagnosis is 9 years - if they find another condition which could be causing the symptoms like PCOS, they'll stop looking and you wouldn't get a diagnosis unless you need a laparoscopy for your PCOS or something else. Have you ever had one for anything?

    Luckily if you do have Endo it hasn't stopped you from having children, but it's still important that you get a diagnosis so you can get help with the pain. Being on the pill or the implant can help keep Endo symptoms at bay but we all react differently to different treatments.

    I'd ask your GP to refer you back to the gynae and hopefully they'll listen.

    x

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