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Fibroid/Awareness/Research

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maryME
maryME

Dear all,

having read all your postings.I feel assured that am not going through this whole painful and inconviencing process that seems to want to mess life up.

I suffer similar symptoms mentioned in the discussion. I had the surgery done in 2005 which lead to some complications, and as a result of that I can no longer wear any bikini and the fibroids have all grown again (very large). I have had severe scan and the thought of undergoing another surgery scares me and stresses me every single day. I do not feel there is huge awareness and research being carried out on fibroid as the cells are benign and not cancerous - which am i am incerdible thankful to God for. I am looking  to create an awareness amongst women and the society on fibroid & fertility. Furthermore, push for more research (through charity work) to be done in looking for a permanent cure to fibroids which affects womens health and  fertility amongst women. I can not do this on my own. I will like your support, some women I have met find it embarrassing to talk about fibroid which I share and understand.One lady told me, it is culturally unacceptable because when people around her community know about it, you do not stand the chance of getting married as having children can not be forseen as it affects fertility.  I have had embarrasing moments where people keep asking for when the baby will arrive and congratulations on being pregnant. As someone who likes fitted dresses (clothings)-I can no longer wear them as I have to change my wardrobe for clothes that can hid the fibroids . please your thoughts on this issue will be highly appreciated. please kindly email me. 

 

0 likes, 12 replies

12 Replies

  • beth64101
    beth64101 maryME

    Posted

    Hi Mary!! I'm right there with you. Every doctor I have gone to tells me " hysterectomy" because I too have fibroids and a belly. I also have unterine wall thickening . And I have some spotting. I really feel this is all hormonal as I am54. I have not had A hysterectomy as of yet because I know when you get through menopause your fibroids will shrink. I feel just like you. I'm frustrated it's hard everyday!! I'm so tired of thinking about all this. It just makes me tired thinking about it. I know we are not alone but I never had any idea this is what it would be like. Hang in theresmile they say it will get bettersmile
    • maryME
      maryME beth64101

      Posted

      Dear Beth,

      I feel incredibly supported and for once I feel that i can openly talk about fibroid as I no longer feel its just me alone, in  order for us to continue offering each other support, and help other ladies out there who are not able to talk to about what they are going through, we need to unite , become committed in order have a voice to create awareness and promote the need for further research in this field. I spoke to a friend regarding this and she said she is not able to talk about this as she feels ashamed- I was totally moved, even though this has a knock on effect on my confidence as a person but I feel what she feels. I need your ideas, strategies and will love to spread this word as far as possible to support other women. please kindly keep this comminucation link on and encourage friends to share it amongst others ladies- fibroid is affecting lives 

  • s91735
    s91735 maryME

    Posted

    Hi Mary -

    I wholeheartedly agree that an awareness and research group should be formed.  I think I read on someone’s post that if the medical community’s solution to an issue effecting only men was to perform disfiguring surgery on the male anatomy and tell them the problem may recur, there would have been a better solution by now….funny but sadly true.

    I have previously posted this – and am doing so again for anyone who missed it – FIBROIDS ARE DUE TO OXIDATIVE STRESS.  See this article and several others on pubmed

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3725220/

     J Assist Reprod Genet (2013) 30:969–974 DOI 10.1007/s10815-013-0029-7  Uterine Fibroids are Characterized by an Impaired Antioxidant Cellular System: Potential Role of Hypoxia in the Pathophysiology of Uterine Fibroids  N. M. Fletcher & M. G. Saed & H. M. Abu-Soud & A. Al-Hendy & M. P. Diamond & G. M. Saed

    And although it is not a permanent solution, I am able to keep my fibroids in check by taking Tempol, a superoxide dismutase mimic.  If I do not take it for about 2 weeks, my symptoms return – and the pain in again excruciating.  I know I have a genetic SNP at SOD2 which is a weakness in my ability to handle oxidative stress.

    I just learned of an Oxidative Stress test from Genova Diagnostics. I know that taking Tempol may skew my results for SOD and catalase, but I plan on taking the test to see if there are any other pathways that can be supported.

    To me, my fibroids are a barometer for my oxidative stress.  I have other, more serious conditions, that have also cleared up with taking Tempol – but I never would have taken this route if my anemia and pain were not so severe.

    What I found may seem like a Band-Aid approach since I may need to take the antioxidant for the rest of my life.  But it is better than the solutions I had before as surgery and hormones were off the table for me due to other health concerns.  I would welcome a more permanent solution – and in the meantime, would like to others benefit from the solution I found. 

    And yes, I agree that we need to work together to that end.

    • Fibroidia
      Fibroidia s91735

      Posted

      Hi S9,

      I am very intriguied by SOD mimic and want to learn more.

      Did it shrink your fibroids?  I realize you have to keep taking it to sustain the effects.

      Are you getting it through a doctor?  I saw a post on another thread about it (only two posts in my endless onnline research on fibroids) and that poster (was it you?  "HealthandHappiness" on Whole Woman) said she got it through a doctor who has been using for 25 years.  I assume she was in the US; I'm in Canada, where there are less options, and I see no sign of it being used here.

      So any additional info would be so helpful.

      I have contacted Tempol and they are sending me some links.

      I don't know if this matters, but I'm 55, not menopausal, and have multiple fibroids 5-10cm.  I'm not in pain, but I'm huge and umcomfortable and I want them to shrink.   NOW!!!

      Thanks

  • Ginagirl
    Ginagirl maryME

    Posted

    You say the fibroids are regrowingoestrogen encourages growth.. have you thought of an Abdominal Hysterectomy leaving the ovaries in place, not sure if you still want children or your age for that matter?..It does not always affect fertility ..I had two children the second Full Term child very small lucky for her..the First,  a boy large 8.2 in weight...luckily the Fibroids were small then, my baby shared my uterus with them, in all I had 5 Fibroids. Then in 2003/4 and I had a Abdominal Hysterectomy leaving the Ovaries left in place which slowed the Menopause. Fibroids the size of big Oranges causing a Cystocele.. I always had a bloated belly post my first baby as I am to understand oestrogen encourages growth of these benign growths. Spinal issues from a work injury in my Low Back so I always had pain in my LOWER back.. for two reasons, always a bloated feeling in the front. I had a miscarriage for my second pregnancy although very early on abt 9 weeks, so possibly to do with the siting of the ovum due to the Fibroids. Luckily my third baby was very small and I had her at 38 weeks. I always love fitted clothes as they look very smart.. Always wanted a Flat belly but never even as a kid did I have that. Now the womb is gone I feel better and still am trying to recover and get my tummy down after all these years.. It worries me I am ashamed of it, although I have very few stretch marks and still good skin it will go down when the weight comes off..My scar is on the bikini Line faded now. So there is a chance to get pregnant depends on the size of the Fibroids really and your general Health.
    • maryME
      maryME Ginagirl

      Posted

      Dear Dawn,

      I may have to suggest that (Abdominal Hysterectomy) to my gyneacologist  as I do really want to have children hopefully someday.Thankyou so much for sharing, you actually make me feel stronger now. You are an incredible woman with some such strength - You are lucky your scar line is faded, mine was so big that it remainds me of fibroid everyday and wearing a bikin is impossible that i am more self conscious - Please i will like have said to the others blogging that we need to come ttogether to unite and be a voice for fibroid. I want all your ideas in getting around this. So good to know am not a lone. xx 

  • mullers
    mullers maryME

    Posted

    I'm with you Mary!  I was shocked to hear of how many women suffer from them (1 in 4) and yet every service station toilet I go into there is an advert warning me of irrectile disfunction and it effects every 1 in 5 men!  I know myself, fibriods cause so many complications - its not just how it makes you feel.  I was turned away from work becuase of it!  More awareness is needed and more alternatives please!
    • Ginagirl
      Ginagirl mullers

      Posted

      I am sure that with Men re erectile dysfunction there are as many problems for woman such as a Cystocele caused after childbirth where the womb falls onto the vaginal canal, and pressure on the vagina this happens also when the womb carries large Fibroids.. Happened to me. Painful sex there on in.. Repair job was done  same time I had my Abdominal Hysterectomy. No more heavy periods ..Free of the pain.. just bsack pain now from the back. sad
    • maryME
      maryME mullers

      Posted

      Dear Mullers, I agree with you on the statistics and I share your concern regarding work. My employee was upset when I took time off for the operation. the doctors told me l would only be off for three days but due to complications during the operation , I was off for two weeks which meant that I couldnt complete my placement and missed out on 8 days. She insisted I should be failed despite letter sent by the hospital consultant to my work place then. Then as a traineer, I felt my world crumbled. l try to stay strong and give my best at work but there are days that I cannot explain the pains that I feel, and how much am bleeding whilst seating there at work - That is why I need you and others to lets have a voice that can provide support for women who are undergoing all the  compl;ications and effects caused by fibroids  
    • fynefidel13
      fynefidel13 Ginagirl

      Posted

      Dear dawnregina, my marriage is 4months old now, i hv being try to get preganant but is not coming, i have heavy flow but just 2days out of 5 days of my mesutral cycle. i went to scan i was told that  i hv firbriod of about 14weeks old that i need to do a surgery. But for now i can me and husband cannot afford the money. Am just some months old where am working i hv not being paid the necessary allowances till next year january. please Dawnregina any advice on what do apart from surgery to be able to get pregnant. thanks in advance for your help.
  • Ginagirl
    Ginagirl maryME

    Posted

    Maryme it is very difficult to continue with work when you are feeling uncomfortable..bleeding copious amounts of Blood and clots. There fore you should take time off..Work is not important your health is. Work managers are always difficult and have little understanding of these conditions.. As a Gynae Nurse I suggest when you are unwell and suffering this condition you shoul be away from any stressful situation until you can get something permanent done about this.I can see it from bith sides professional and having suffered it. So Please Please Please Ladies put yourselves first. I would suggest anyone not wanting more children to have the womb removed once and for all.. Such a relief post operatively No more periods and not dragging sensations or Pain. If you have a Bladder problem get that fixed at the same time.. Be insistant ..just remember the NHS is cash strapped so be firm with what you want.
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