Hystorectomy

Has anyone had one while having APS? And what's the recovery like?

My coil came out yesterday!( massive clots) Had it fitted due to very heavy periods. It made little difference, if anything worse as they lasted 10 weeks. Seen the consultant just before coil came out who had suggested ablation but gather that is not always successful , so was wondering about hystorectomy .

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  • Hi Lozzaa!

    Wondering why you are considering hysterectomy. Are you in pre-menopause? I am. :-) Are you having symptoms other than massive clots?

    It's such a major surgery and in my friends who have had it, there is mixed feelings about whether they would have it done again (if going back in time).

    If it's too personal of a subject, I understand.

  • Hi. I'm 47, so it's not far off. I've always had heavy periods which was liveable with, but on the anticoagulants it was so much worse and lasted days longer. Also anaemia was happening and fatigue was getting worse...... So all docs advising coil, which helped a bit, but has just come out yesterday. All a bit grim Today. Very similar to the lady who,wrote sticky blood book.

    Heamatologist recommended ablation , but that was the day before coil came out.

    I've heard its a bit hit or miss, whereas the hystorectomy , keeping ovarys, sorts out the main problem.

    Thanks for asking

  • Hi this something which will have to be weighed up, (pros and cons), by all medical staff involved with you, I can't answer this for you, however there will be others on here who will have been through some sort of process regarding this. MaryF

  • If you have migraines natural menopause is recommended, because hysterectomy can increase your migraines. I had DUB and just had a D&C, which straightened things out, but I wasn't on anti coagulants. My sister had a Uterine artery embolisation, which worked for her and is the least invasive procedure. A lot of women are not happy after having a hysterectomy, and there are less invasive procedures. I don't know where you are located, when my sister had her procedure it was new and she had to do research to find someone to do it.

  • If you have migraines natural menopause is recommended, because hysterectomy can increase your migraines. I had DUB and just had a D&C, which straightened things out, but I wasn't on anti coagulants. My sister had a Uterine artery embolisation, which worked for her and is the least invasive procedure. A lot of women are not happy after having a hysterectomy, and there are less invasive procedures. I don't know where you are located, when my sister had her procedure it was new and she had to do research to find someone to do it.

  • Hi Lozzaa, i have APS, i had a hysterectomy but kept my ovaries.We are all different so recovery depends on the person. I am a positive type, so recovery was fine for me.

  • Thanks for the replys. Good to know about the different options. I'm just wanting to get the problem sorted so that I can get more energy!

  • I completely understand. I am also 47. Our five year old was a surprise bonus. :-)

    Yes, energy is so very important to participating in life. Have you had your vitamin D blood level tested. Taking 5000 i.u. of vitamin D3 every day is making a huge difference for me. I had a doctor dismiss the low vitamin D blood test a few months ago and say "who doesn't have low D these days.". The difference is some people have low D and it doesn't impact their quality of life, while for me it significantly decreases my energy. One of my doctors is very up on Vitamin D and it's impact on fatigue in those who are hypercoagulable.

    Here is just one study that found that increasing the 25(OH)D levels may have a beneficial effect on fatigue. onlinelibrary.wiley.com/doi...

    In this study, "Vitamin D deficiency was related to a higher degree of fatigue." rheumatology.oxfordjournals...

    I am finding the closer to menopause I get, the lower my blood level of D and the more supplementation I need.

    At the same time, Vitamin D is only part of the picture with APS and not all of us have Vitamin D issues.

    I feel for you. I hope it all gets sorted out easily and without much stress. It's not easy being women. On the good news side, I asked my grandmother years ago who was 101 at the time "When did you go through menopause?" She laughed. She couldn't remember since it was somewhere in the half-way point of her life.

  • Hi Lozzaa,

    I also have APS and had a hysterectomy in my mid 40s. I did keep my ovaries. My Dr. had me give myself lovenox injections for 8 weeks afterwards, but my recovery was fine. I had reconstructive bladder surgery at the same time and I think I had more discomfort from that than the hysterectomy.

    Good luck with whatever you decide,

    Lari

  • dHi I have both SLE and APS. I had a hysterectomy when i was 28 because of clotting and very heavy bleeds. however at that time I had not been diagnosed with anything other than difficult gyni probs. I had the op and had never looked back from that point of view. It took me 4 weeks to start to get my strength back but recovered fully. It has taken a further 25 years for the docs to diagnose me and now they wont take responsibility. Im on a treadmill go to docs. they say the consultant must make a decision go to the consultant he says is the coagulation team and when I go to them they put me back at the docs. In fact I now have a letter from the coag team to go to see them as im just starting Warfarin. Ive been on warfarin for the past 8 months. Tearing my hair out.

    Any way ignore the moans if you need a hysterectomy go for it.

  • So day 10 of period , but day 6 of the massive clots and bleeding. Going to see gp on Friday but am wondering whether I should go sooner as I have a dull pain under left breast/ breathlessness .

    I have recently started anti acid medication to see if that was the problem, but making no difference.

    I have had every blood test going, repeatedly . Vitamin d level fine etc.

    I'm researching the various options , well maybe tomorrow or whenever I can be bothered.

    Thanks for the replys

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