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I feel so alone with this, does anyone relate?

Posted , 6 users are following.

Sm92
Sm92

This is long but I need to write this.

I started my period at age 12. They were always very heavy and painful from time to time. With age they got more painful. When I was 17 while attending my fiancés brothers graduation I was on my period. I started taking such severe stabbing pains in the centre of my pelvis accompanied with the dull aching period pain I was already experiencing. After hours of agony it subsided but i always felt on edge incase it happened again. I take a regular period, it comes on time etc. But every two weeks I started to bleed, unknowningly. On my 18th birthday I was wearing white trousers. To my horror when I got home I could see massive staining all down my thighs. At this point I had enough. I went to Doctor and they put me on the pill to make sure Im bleeding only once in the month. It worked but I still had such bad period pains. Sore lower back, breast tenderness, dragging dull aching pain down from near my pelvis bone right down my inner legs causing pain that I can barely walk. Painkillers sometimes never ever worked. I thought this was normal. In July last year I woke up with a pressure feeling in my bladder and bowel. It felt like a fullness. When I sat down I could feel a heaviness pushing up inside me. Very uncomfortable. The next day I took the worst pain of my life, extremely severe pelvis pain. I was in agony, I could barely breathe. The pains were so intense and again in the centre of my pelvis. I also had sharp rectal shooting pains. When I tried to empty my bladder/bowels I thought I was going to pass out. So my fiancé took me to Dalriada urgent care. The doctor suspected it was a urine infection, which to be honest I wasnt convinced as I didnt need to go etc. I done the test all was clear. This went on for days and eventually subsided. The following month my period was due, the exact same situation occurred, I had to leave work and go to the hospital. They diagnosed me with Dysmenorrhoea. So I thought I maybe I was overreacting. Again it subsided after a few days and back to normal. I was getting spasms of pain back and forward. The next period was due, yet again severe agony, I was dying with pain. Went to the doctors to which I was gave strong painkillers. I was reffered to get an ultrasound, which a 4.6cm cyst was found. Gynae wanted to then see me and do internal ultrasounds. In between times I have countless blood tests and smears to check for anything that may be causing this. I was 110% healthy apart from a CA125 test which came back at 35, to which they repeated the test 2 weeks later and it rose to nearly 70. The gynae said he wasnt concerned with this as Its not an accurate test. He done the internal ultrasound and smear. The ultrasound showed a cyst with blood filled clots inside. He said it was a simple cyst and he wanted to see me again in 6 weeks, so I went again, all blood tests etc came back 100% he checked the cyst and said its taking a long time to resolve and for me to moniter it myself pain wise and wait 6 months to be seen again. He suggested that it could be Endometriosis or just the fact i have a cyst. It still doesnt explain the abnormal bleeding inbetween periods which concerns me. I had to go back to the doctor last week to be put on the pill again because I was bleeding for 3 weeks steady. He read my letter from gynae and it said I had a haemorrhagic cyst and that It ruptured. I am getting married to my fiancé in July this year and Im so scared incase the cyst comes back. I understand they can. Has anyone had any stories similiar to this. The pain with my last 2 periods was alot better and I dont feel as much pressure in my bladder/bowels although It comes and goes. I feel alone sometimes and dont know anyone who has this to talk and understand it.

Thanks smile

0 likes, 5 replies

5 Replies

  • katy08921
    katy08921 Sm92

    Posted

    I was 8 I feel your pain xx cysts can come and go especially simple cysts. They can also contribute to abnormal bleeding xx I had two complex cysts removed from each ovary just over a year ago! I have had cysts for 8years on and off and horrendous pain! I'm currently waiting to go for a pre op on the 6th of next month to have polyps removed from my womb! It's a never ending battle! I have my left ovary which is polycystic but I don't have polycystic ovaries! I have also been diagnosed with bilateral trapped nerve either side of my stomach which causes pelvic pain thigh pain abdomen pain! They will do the wait and see for a long time but if you're not happy change your doctor .......good luck xx

  • sanya11314
    sanya11314 Sm92

    Posted

    Yes, can relate,

    always had painful periods in teenagehood and twens, could not attend school for one two days,

    a 15min infused bitter yarrow cup of tea helped (drank 2 cups a day)

    and later found Naproxen tablets (no other over the counter painkiller like paracetamol or ibuprofen does it) to really help with pain, but needs to be taken asap.

    I have no endometriosis and still very painful period pains until first child (got a bit better afterwards, still sometimes need Naproxen on first day and I am passed my prime now).

    I know I have no endometriosis

    because I had a laparoscopy due to a complex cyst (teratoma) end twenty of age (no problem to remove and caused no pain).

    My teenaged daughter constantly had hemorrhagic luteal cysts around 3cm that took months to burst.

    Pain on ovulation for few hours, bad menstruation pain and out of the blue massive pain, always bit free pelvic fluid (know that due to repeat ultrasounds, MRI and laparoscopy in her).

    Now on CONSTANT birthcontrol pill since withdrawl bleed hurts, too.

    (until spotting was longer than 10 days after 4 months, give it a break for 4 days, hormone-withdraw-'period', then continue again until spot bleeding asks for a 4 day break again) 

    The functional hemorrhagic cysts are gone now, no big ones forming anymore, just tiny pearls sitting in there.

    Hemorrhagic looking cysts can be simple/functional, but also be endometrioma and I guess they like to distinguish that.

    An endometrioma (=endometriosis IN the ovary) will never burst and disappear.

    A hemorrhagic cyst will usually, 

    cut off is 6cm in size, then they often don't burst anymore after months even if just simple and liquid filled.

    All you can do is stay positive, try to tackle the pain,

    ask for answers as to your bleeding (e.g. how thick is your endometrium/lining in the uterus? hormone status!! and so on)

    and stay in the imaging loop for check ups (checking on cysts and uterus).

    Working ovaries have follicles (cysts if you like), but in countable numbers and size not more than a ping pong ball.

    CA125 goes up in inflammation too and is a very individual value and more for frequent controls. What is 'normal' range is a statistic, 35U/l is not the philosopher's stone at all. It can go into 100s even in benign situations.

    All the best!!!

    • Cysthell
      Cysthell sanya11314

      Posted

      Hello,

      I am in the same boat as your daughter. functional cysts every month that burst and cause pain. Currently on BCP for about 3 months, can I ask you how long did it take for your daughter to feel better in BCP?

      thanks

  • dyanitta
    dyanitta Sm92

    Posted

    My story looks a lot like yours. I always had painful period. From April last year until November i had stomach pain everytime i eat spicy or garlic. It was pain, vomit, diarrhea or bloating. At the end of November i decided to see a doctor. I found out that i have an ovarian cyst (7.5 cm).They put me on pill to stop my period 3 months to make the cyst decrease. In december, after 1 month of contracepitve pills i had sever pains, like you had, so i went to hospital. Doctors said that i have urinal infection. They gave me some tablets and everything was fine. This month, after i finished the second tube of contraceptive pills, i had the same pain. I took some pain killers and the pain stoped after 3 days. Now i'm waiting for next week to see the GP, because after i went to hospital, they made me an appointment for ultrasound and that doctor said that i need surgery to remove my cyst (laparoscopy). I am positive.. You should be to. Hope you feel good and everything will be fine.

  • BMwas974.
    BMwas974. Sm92

    Posted

    I have just learned I have cysts on both ovaries - the two on my left are the size of small peaches. I'm scared as hell and hurt so much. From what I have read, cysts usually reabsorb within 3 months so to tell you to wait until 6 seems a long time. I'm surprised they haven't considered removing the cyst... good luck to you and congratulations on your upcoming marriage. I say go see another doctor

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