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Highly considering a hysterectomy

Posted , 5 users are following.

Ashrose85
Ashrose85

Warning, a pretty lengthy post.

My name is Ash. I have bad endometriosis ( as well as severe fibromyalgia ) and have suffered from both for many years. I have tried many BC types which halts bleeding aside some spotting, but if I ever miss a nuva ring switch out, as I have to every 3 weeks without breaks, the endo flare is excruciating. Which used to not be so bad during my nuva ring use. Even aside this I have constant cramping anyway and pms symptoms 24/7. Which makes my fibro flares constant as well. And the weight from meds and hormones is so hard to shed, especially with the pain.

My skin always feels like it's crawling and I am always so moody. I have tried so many antidepressants and anxiety meds/mood stabilizers for years. It is so taxing on my mind and body. None work, make it worse. Or work for a very short time. I have constant insomnia and anemia. And have ongoing infections that required several uncomfortable procedures. I've also had 3 laps done but of course it grows back, and with webby Asherman's syndrome.

I used to want kids but everyone in my family is sick in some way. Mom has fibro and other issues, dad passed from heart attack, aunt died from cancer, cousin has endo, uncle died from a stroke, diabetes in others, mental disorders and so on and so on. And I was born with hip displasia and suffer from immune issues from birth. Also a slight chance I could get cancer due to issues.

I have no doubt some sickness would be passed on. As well as a possible miscarriage that I could mentally not handle. Aside the fact that with my fibro making me so weak ( was wheelchaired in July but now use a cane ) I am in no position to take care of a kid let alone myself. At this point I shower once a week due to how painful the water is on my skin and how draining it is. Aside my bad depression and anxiety and diabilitating mental state.

Basically I am SO sick of all the meds, the surgeries, expensive natural supplements that I can not afford monthly. And I am mentally suffering. It is a hard decision and I will go through more therapy. But so many have found relief. I heard black cohosh can help a lot with hot flashes during menopause as well. Which I can try to afford. My doctor says it would be better to take the whole thing away as my ovaries would keep producing the endo, and possible ongoing pms symptoms. I feel my anxiety is more hormone based at this point. And am so sick of all the pills, although I get sick if I'm on nothing at all.

The constant pain, the flares, the never ending pms and lack of sleep. I can't take it and feel like I'm stuck. I know I will probably mourn, I hear that is normal. A part of me is still hesitant, but I want to get better for me now. And as it is I hardly have any quality of life. I am in daily perpetual hell. sad

0 likes, 15 replies

15 Replies

  • froggy28
    froggy28 Ashrose85

    Posted

    I'm so sorry that you have all of this to cope with. I had ovaries removed and hysterectomy last year for endo and it helped.... 8 months and no pain but because of my age I have to have low dose hrt so still chance it will come back but looking good so far. Just be aware that not having hormones can affect you badly too so read up about menopause symptoms and oopherectomy pros and cons... all depends on age too.... if you are 100% sure you don't want kids then I'd recommend it but it's very final they can't put it back so read up all about it first. I'm pleased I did it but that's just me. Good luck
    • Ashrose85
      Ashrose85 froggy28

      Posted

      I am so glad to hear it helped you. I'm leaning more towards getting it, suffering way too much. Cramps galore and never ending mood swings. Endless meds making me worse. Trying holistic but it is very expensive.
  • colleen_2828
    colleen_2828 Ashrose85

    Posted

    Oh my goodness you poor girl, I don't know how you manage but I do empathize re the meds. I worry constantly about time off work

    due to feeling drained & having to work full

    time is a must so its scary to be faced with

    the prospect of a big op & 3,months off work

    especially when it could have been done

    during my op in 2014. But so many people

    say they feel better once they are over

    things & its all gone so I am hoping I shall

    feel the same. I wish you all the luck in the world & thank you for sharing. God bless.

    • Ashrose85
      Ashrose85 colleen_2828

      Posted

      I hope you do feel better. I hate that so many suffer from these issues. It is torture. I really do hope for a change for the better and at least less pain.
  • elaine35397
    elaine35397 Ashrose85

    Posted

    Poor you, I too have suffered for many years with severe endo and AS (ankylosing spondylitis).

    This is in the same family as your Fibro. It too is an auto immune disease and extremely painful during flare ups!

    I am convinced that hormones play a big part with diseases running side by side. My mum and sister have both suffered from the same!

    They both had hysterectomies in their 30's and their AS reduced considerably!

    I made to 50 before my hysterectomy, had it 12 days ago! Will wait and see! The endo pain has gone, just hope I don't have AS flare up!

    I hope you get the support you need, best of luck xx

    • colleen_2828
      colleen_2828 elaine35397

      Posted

      Thank you Elaine. I will let you know

      on this site after meeting when the big & very scary day will be.

      God bless.

    • Ashrose85
      Ashrose85 elaine35397

      Posted

      I hope it helps you a lot. Keep me posted if you can about how it goes. Hoping for the best. And that it may help me as well if I get it done.
  • karenh1969
    karenh1969 Ashrose85

    Posted

    You have been through a lot and still suffering by the sounds of it. I suffered with fibroids and endometriosis from the age of 22 I got sterilised at the age of 23 after having my son hoping it would help with my periods. I was in so much pain I couldn't walk without my legs giving way to the constant pain I was in. I had the surgery where they burn the endometriosis off your womb and relief of not having periods was great but I was still in agony because of the fibroid. I also ended up with a large cyst on my ovaries. I carried on suffering for years. I also have HS which is auto immune desease and had flare ups when I was on a period or after the op around the time I was due.Finally my GP after so many years saying I was too young to have an hysterectomy sent me to see the specialists. She asked my history and said would you like a coil fitted this will help. I said no way I have had years of suffering I want it all took away.

    I finally had my full abdominal hysterectomy and bso 19th May last year and I wish I could have had it sooner. I went back to work after 5 weeks. I have just gone 46 and was told by my gynaecologist I could not have hrt because of breast cancer in the family. So I have suffered really bad with hot flushes but 3 weeks ago he decided I can take the female hormone oestrogen and I've felt great. Without it is was tired all the time and I felt like I had been stamped all over my bones ached so much. The only downside from having your ovaries taken away my gynaecologist said was that it would be hard to lose weight because once you have them removed your metabolism no longer works. So at the minute I'm struggling to lose around a stone I've put on. I have been doing weight watchers for 8 weeks and each week I go I haven't lost weight. I'm beginning to feel like a rabbit I get through so much salad but I'm so disappointed I haven't even lost a pound. I go to the gym 4 times a week now I can exercise more but still find it painful sometimes. All the joys of being a woman. Why don't men have to deal with the crap us women have to go through. I wish you luck ashrose in your decision it was the best one I ever made. Xxx

    • colleen_2828
      colleen_2828 karenh1969

      Posted

      Hi Karen my name is Colleen ive just

      read your post & I couldn't agree more

      women get the lot, all the crap its

      unfair. I have forgotten what it feels

      like to be out of pain, its strange really

      as soon as I hit 60 I changed from

      being fine to being constantly unwell.

      On the weekend of my 60th birthday

      I ended up in Hospital in so much

      pain they found I have Divaticular

      disease so had bowel op, that led

      to finding endometriosis & now I

      am to have hysterectomy. Its so hard

      trying to work full time whilst feeling

      so unwell I asked for the lot to be

      taken while they were doing bowel op

      as family history isn't good but was

      told no, now 2 years later I have to

      have it anyway. I'm sorry to be such

      a moaner & I shouldn't be having read

      all the things everyone has gone

      through. I wish us all much better

      health & peace of mind.

    • Ashrose85
      Ashrose85 karenh1969

      Posted

      I am so happy to hear it helped you. I worry about more weight gain as I am overweight and it is very hard to lose. Especially with my meds. And I feel I produce too much estrogen. I'm trying to find a new primary to take a hormone test as mine won't work with me and seems to brush me off about it.
    • Ashrose85
      Ashrose85 colleen_2828

      Posted

      Also don't feel you are a moaner. We all suffer, support places seem to be the best places to vent. I appreciate others understanding and support so much.
    • colleen_2828
      colleen_2828 Ashrose85

      Posted

      Me too, I find it such a comfort its like picking the phone up & calling a mate

      for a chat, I really appreciate it.

      I had an Endoscope yesterday to

      check for Ulcers but thankfully they

      found none just a small infection at

      top of stomach so antibiotics again.

      Honestly I am falling apart from both

      ends & trying to work & fit in hospital

      Appts is a nightmare. Back to work

      tomorrow. God bless.

    • Ashrose85
      Ashrose85 colleen_2828

      Posted

      Hoping for better times. You are very strong. I can't even think about working right now. Just not enough strength in my mind or body. So much pain so I'm on disability. Id love to try eventually when I feel better though.
    • elaine35397
      elaine35397 colleen_2828

      Posted

      Colleen, you are not a moaner - everyone is different and you have got it all going on!

      I was diagnosed at 18 with Ankylosing Spondilitis (AS) auto immune disease - this contributes to most of my illnesses - ulcerative colitis, iritis plus neck,back and nerve problems!  I cannot take any NSAIDS like ibrufen etc - as it causes stomach bleeds. I can honestly say that since my hysterectomy(to get rid of endometriosis) 16 days ago, I am feeling fantastic for the first time since my 20's.

      Obviously, this doesn't happen for everyone and I count myself lucky. Don't apologise for "moaning", as this is what forums are for - supporting

      others. 

      I hope work goes ok for you.  Best wishes xxxx

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