Prescribed Esmya and want children

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Hi all, I got prescribed Esmya yesterday and would like to get pregnant when my fibroids shrink or are removed, have been reading up and theres a 0.5 chance it can put you in an early menopause? I've tried to search the net for experiences of women taking it to shrink fibroids so they can have children after but not much is out there. Is it safe for someone wanting children to take? my consultants arent being helpful and keep telling me to consider a hysterectomy as a myomectomy is harder on the body or do nothing and try and get pregnant again(miscarried twins in may) my fibroids are all intramural 7cm and three 1-2cm ones so I dont trust them as they arent really listening to me. I turned 37 last week. Also if its safe when do I start taking it? surgeon said right away but the instructions and my doctor says first day of my period(in about 15 days) thank you

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  • Posted

    Hi carebear

    Hope you are slowly coming to terms with your sad loss in May, it must be very raw still, my feelings go out to you as I lost my dad around the same time and some days it is really difficult, but you just have to trust, as I do, that the pain lessens over time. You have been through enough this year and your doctors should be listening to you. It is obvious you want the chance to carry another pregnancy to full term and it is cruel of the doctors to even mention hysterectomy in your circumstances. So it may be more difficult (for them) to have the myomectomy, but other than UFE is the only option to retain your chances of children. It is your choice which procedure you want to have and if they will not agree the procedure then ask to be referred for a second opinion so you can find someone who will. How dare they?

    Esmya is an interim treatment to help shrink the fibroids prior to surgery and is used for any of the procedures, so the risk is obviously minimal. The only thing I would say is the side effects can be quite tough, I had a rough 3 months (as others have had too) and am now on Zoladex implants, which I could have straight after the Esmya instead of taking a 2 month break, side effects are similar

    but if it gets you to your end goal it is worth a few months of feeling unwell (?)

    I am hoping I can tolerate staying on the meds until natural menopause (54 now), without need for surgery so emotionally  in a different place, but fibroids and endometriosis cause the same symptoms and difficulties whatever our ages, so I know some of your difficulties.

    Speak up for yourself and make sure they hear you, good luck!

    Let us know how you get on

    Best wishes 

    Julie 

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    • Posted

      Aww I'm so sorry to hear about your loss Julie, losing a parent is one of the hardest things we'll go through in life. I lost my mum to cancer when she was 45. Its extremely hard and takes years but the pain(in my case anger as well) does stop eating away at you, then you start to live a little again.

      Thank you, not being able to try again is making my sadness worse tbh. I definitely don't want a hysterectomy.

      They want me to have a hysterectomy or leave it even though it's making my cervix so tilted it cannot be seen in an examine or when trying to do a smear, makes me aneamic and I've been on iron tablets 4 yrs with not a day break, floods like a scene out of a horror movie.  I cannot make it to the toilet if it gets close to an hr since I changed my super plus tampon and two heavy towels, bigger than golf ball clots, pelvic pain if I lay on my back, sharp pains two weeks before my period. They say a myomectomy won't make those things better, it could be other things causing them. 

      If I'm honest I'm scared about taking esmya because of the dizziness etc. I suffer from vertigo and migraines and I don't want it to make them worse but you're right, short term feeling rubbish for little ones is worth it. Did your fibroids shrink with esmya? What size were they and what options did they give you? 

      Sally xx

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    • Posted

      Hi Sally

      Sounds like we have similar experience with the heavy periods and anemia. I was unable to leave the house during period and constantly in the bathroom (always looked like a murder scene) My biggest problem is the hair loss from the extreme anaemia . I lost at least half my hair - very thin now and can see my scalp, which is the most distressing symptom. Iron tablets seemed to have helped a little, but as you know they cause other problems!

      I have several large fibroids (10 - 15cm) which are pushing on both bladder and bowel, which is causing problems with frequency and urgency, meaning I am still in the toilet every hour and up 3 or 4 times in the night also, plus endometriosis which is causing severe cramping with leg and back pain. 

      After 4 months on treatment  I have not had a heavy bleed at all, but wear a towel every day for light (yay!) spotting or light flow most days, but not a problem to deal with at all. It may cause a pinkish or brown discharge which can have a nasty odour due to the fibroids degenerating, but that's what we want eh? I did feel a little dizzy for the first couple of weeks as your body gets used to the huge hormonal changes but they will get better. I felt a lot better when I started taking the tablets at night as you then 'sleep off' some of the dizziness and not so tired during the day also.

      I have not had another scan so don't know the actual size, but my stomach is changing shape and much flatter which hopefully means they are shrinking. I was also worried about taking the tablets but I am hoping they reduce the fibroids sufficiently to avoid the total hysterectomy which is the only option I have been given (due to my age), but it is definitely something I am trying to avoid if at all possible. I have just spent most of the last 2 years in the hospital or at home with my dad after his stroke to when he passed (on my own - mum passed 12 years ago and sisters wouldn't help and didn't attend funeral so very difficult time)  I would like to stay away from the hospital for as long as possible. Any time as an inpatient would be very difficult as I am also a single parent of an autistic child, and no-one to look after him, plus the few months of recovery would mean no driving in case of emergency etc. and his special school is 20 miles away in a country location so not easy to get to an public transport, a taxi would cost near to £100 so a little difficult.

      I was told that the heavy bleeding and pelvic pain was more likely caused by the endometriosis not the fibroids. Have they checked for any co-existing problems? I had a laparoscopic laser treatment for endometriosis 16 years ago as a day patient which really helped, but bleeding getting worse again over last 4 years or so until really impossible to deal with anymore. 

      Julie x

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  • Posted

    Sorry, forgot to say:

    You take first tablet on the first day of your period. For me, it stopped 14 days of heavy flooding and clotting every month for very light bleeding / discharge most days in the month along with cramping and initial tiredness or dizziness and bowel problems (settled down a bit after 3/4 weeks so stick with it if you can it does get easier) which needed a few pain killers and a heatpad,  but at least I could leave the house. I just wear a pad every day and don't worry any more about knowing where the nearest loo is in case of emergencies.

    General Advice on here is take them before bed rather than in morning which may help with tiredness. I found this out after the first month of not feeling too good after looking on here and it certainly helped me.

    Take care

    Julie

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  • Posted

    Hi Sally

    How are you getting on with the Esmya tablets? Hope you are not getting side effects.

    I am going for my Zoladex implant this afternoon and was wondering how everyone else was doing. Hope the nurse is a little more gentle today, I did have a big bruise for a couple of weeks last time but maybe now she's done one it will be easier.

    Best wishes

    Julie

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