'Painful periods made my life hell'

donna, 2 months

i have been feeling severe menstrual cramps since age 13 no doctor found my complain until about 2 weeks ago when they realise i was diagnosed with endo it is a very tramatic experience 4 me, av no children and the future lies ahead of me but my health comes first wat am i going to do i feel as if i am going to go mad

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Julie Marshall, 3 months

I can relate to all these comments..was told 3 years ago i had severe endo age 42..but suspect had for quite a few years before this.1st op i had a re-section this is when all the lining of the womb is burnt of to temp stop or slow down ur periods..all was well until 11 months later was in severe pain..2nd op had large chocolate cysts removed on both ovaries and uterus bowel bladder all stuck together..again fine but after only 4 months pain returned much worse this time had 3rd op a complete hysterectomy as cysts had returned and ovaries where in a mess. Was put on a low dose of hrt..fine or so i thought?Again 6 months later you guessed it another op nu 4...adehsions in my pelvic cavity,bowel area and appendix. I am sure my hrt is feeding my endo any one else having same problems. Have really had enough now.

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Theresa, 4 months

I have suffered with severe Endometriosis since I was 16 yrs old and it has made my life hell. Not only have I had to have so much time off work off sick, it made me disabled and I had to have a total abdominal hysterectomy last year at the age of 37.....and it came back. I cant have anymore surgery around my stomach area as it may kill me and I am susceptible to adhesions. I dread what I will have to go through the next time it all returns.

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Imani, 7 months

well, im only 25, and i have cramps when my period comes on, but not that painful. but at the top off my panny line,i feel a lump, and i dont know what it is. it's right about where my ovaries is. im very scared. can someone please help me? tell me what should i do?

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Judy Birch, about 1 year

I sympathize with all of these comments. I have suffered with severely painful periods since I was 17, was diagnosed with severe endometriosis aged 25, have had just one ovary since then, have had rectovaginal endometriosis as well as ovarian endometriosis, appendix and ureter ( almost lost a kidney through advanced endometriosis ). Scar tissue and adhesions have been a major cause of pain and disability for me and the impact on my family has been immense. We have established the pelvic pain support network where those with such experiences can find support via the message board, e-mail or phone. www.pelvicpain.org.uk

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MISS DEBORAH DAVIES, about 1 year

HI,IM 27 YEARS OLD AND I HAVE JUST BEEN TOLD IVE GOT A RETROVERTED UTERUS,IS IT DANGEROUS OR NOT?I DO SUFFER FROM ALOT OF BACK PAIN PARTICUALLY IN THE MIDDLE AND LOWER BACK AND I HAVE PROBS WITH HEAVY PERIODS AND IM BACK AND TO THE LOO LOADS IN THE DAY AND NITE,IM CURRENTLY WAITING TO SEE A GYNAE CONSULTANT.

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Elaine Riley, over 2 years

I can sympathise with Deby, as I've had menstrual problems myself, which started in my teens with heavy and irregular periods. Like Deby, I was put on the Pill, trying first Marvelon and then Dianette. Neither worked very well, and made me spotty. For a while, the problem went away in my early twenties; but this may have been due to my eating disorder! At about the age of thirty, my menstrual problems returned with a vengeance. I experienced symptoms such as heavy and irregular periods, sweating and "hot flushes", prickliness of my skin and aching joints, a cramping pain and back ache, and also diarrhoea and acne. I cannot describe my embarrassment! Things got worse when I also started geting mood swings around my period! Again, the Pill was suggested, but I declined, because it had peviously been little use. My G.P.referred me to a Gynaecologist, and after an ultraound scan, PCOS (Polycystic Ovary Syndrome) was diagnosed. Initially no treatment was suggested. My symptoms got steadily worse, to the point where I had to use the heaviest sanitary protection at all times. I became very tired and lethargic, and very frightend of having an "accident". During my periods, which were by the age of 35 so irregular the cycle was hard to calculate, I would get dizzy and lightheaded. Diarrhoea was a constant problem, as were blood clots. I felt embarrased to go out in case I was "caught short". I'd carry loads of pads and Tampons about in my handbag, and sometimes a change of undies! By this time I was working as a Social Worker in a large Hospital, and found my menstrual problems a real nightmare. My manager was a man, so it was hard to discuss matters with him - he had very little patience or understanding, and I felt embarrassed discussing my "problem". I'd been referred back to the Gynaecologist because of my ongoing problems. It was now felt that maybe the PCOS diagnosis was wrong, as I did not have all the typical symptoms. They treated me instead for Menorrhagia, prescribing Mefenamic Acid to stop the pain and heavy bleeding. I'm now 37, and have suffered excruciating pain with my heavy periods for about two years. I feel so unwell around my period, all I want is to stay in bed with a hot water bottle to ease the ache. I'm waiting at present to go into hospital next month for a Hysteroscopy and D&C, because now it's felt that I have Endometriosis and/or Fibroids. I've also been told I have a Retroverted Uterus. If you want to know why I've written this, it's to explain how frustrating these menstrual problems can be. I've felt confused by changing diagnoses, and have often found it hard to understand what I have been told I've got. Worst of all is the length of time it has taken to make a diagnosis, and to be offered some form of treatment. I understand these things can be difficult, but a little support might be nice! I've noted that people around have no idea of what I'm experiencing. Most men, including my boss, and male G.P.s just dissmiss it as "womens' troubles". The general attitude seems to be that I should stop making a fuss, and just put up with it. I bet there are many other women who feel the same as me. The pain I have, and the heavy bleeding are getting in the way of my normal life. They affect me at home, and at work. I've become Anaemic. Recently I've passed out on 2 occaions because of my periods - once in the shower, and once while hoovering. Imagine if that happened at work! But my boss still cannot understand why I need time off aroud my period. He's even tried disciplining me for it! I'd like for there to be more understanding and support for women having these difficulties. Menstrual and fertility issues may not be life threatening, but they can still be a seriously debilitating problem. They cause pain, tiredness, Anaemia, and can be linked to anxiety and stress, especially if a sufferer feels unsupported. Employers maybe need to learn that not all "disabilities" are so obvious as a wheelchair. There may be people out there, like me, who need help to deal with less obvious problems, ones which can be embarrasing to talk about. Could someone lend a sympathetic ear?

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