Has anyone had to take time off work with ESMYA?

Posted , 6 users are following.

Hi all

I'm on a day 20 of ESMYA and side effects have been tolerable at home. I just can't see me managing a full day's work and have actually been off sick for last 2 weeks. The main difficulties I've been having include:

1. Heavy period first 2 weeks (but not as bad as normal). However, after haemorrhaging badly at Xmas and losing over 30% of my blood volume, I now suffer quite severe anxiety with the bleeding and found it difficult to even leave the house initially. Bleeding has reduced but still there, on and off.

2. Extreme fatigue, I often have to sleep in the pm. Some of this may be due to the anxiety but I think it's the ESMYA. Thank goodness for an understanding hubbie as I also have 2 children at primary school.

3. Occasional headaches and light headedness.

4. Abdominal discomfort - a real aching sensation.

5. Dry red skin on my face that just keeps getting worse. Likely due to the hormone disruption.

I'd just like to ask if anyone else has had to take time off or do I just have to "man up" and get back there. Thing is, it's not a desk job. I'm a speech and language therapist on a really busy stroke unit - I'm on my feet the whole day, it's stressful as and very little respite. Think nurse in acute ward and you'll have a rough idea. Sorry for such a long post.

Caz

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  • Posted

    Hi Caz,

    I'm currently on my second month of Esmya, I have been off work for sometime with pain and discomfort from fibroids I have one that's nearly blocking my rectum. I started Esmya and was hoping I could feel some benefit and return to work as a care assistant in the meantime while I await a hysterectomy but Esmya's side effects hit me when I would have had my period, I too am lightheaded, tired all the time, have had headaches but my whole body aches all over too it's hard to be touched sometimes. I returned to my doctor last wed and he said its side effects and I have to stay on the tablets to be ready for surgery but told me he didn't think it was safe in my profession to return and has given me another sick not that takes me up to the end of April which is when I see my gyne again.

    I'm going stir crazy and feel like a 90 year old I'm only 36.

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    • Posted

      Hi Sazdebney

      I totally empathise with you - it's such a hard time for all of us women and I think that's why I find this site so useful. In some ways it's reassuring to know that someone else has been off work too with similar side effects (although yours do sound worse with not being able to be touched). I'm just not sure how much more of this I can take. I too feel like a 90 yrs old at times. I'm a bit older than you at 47 but up until Xmas I'd always been quite fit, cycling over 100 mls a week and swimming a couple of times a week. Now I can barely walk the dog without feeling shattered!

      Take care

      Caz

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    • Posted

      I'm totally with you on that one some days I've had to have two naps and even just taking a bath knackers me out. It's no fun at all!

      How long do you have to be on Esmya for? Is that also for upcoming surgery?

      X

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    • Posted

      Hi. Consultant is looking for a 20% reduction in size with this course of treatment and then 50% reduction with a 2nd course. I can't have a myomectomy because it goes right through the uterine wall. I really don't want a hysterectomy and for some reason the embolisation scares me - I really don't like the idea of my womb only being half perfused. That leaves me with hysteroscopic resection which, unfortunately, is one of the few procedures that the NICE guidelines doesn't comment on because of lack of evidence I think so I'm hoping to do a lot more reading about the options.

      What are your plans?

      Caz

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  • Posted

    Hi,

    I was signed off work for the three months I was taking it.

    Although I think it just wasn't for me, the worst side effects where headaches, leading to nausea and very dizzy.

    Every one is different!

    Good luck

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    • Posted

      Hi Sarah

      Thanks for your reply. I was just wondering if your fibroid did shrink. I'm assuming that perhaps it didn't because you said it wasn't for you. How are things now for you?

      Caz

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    • Posted

      Hi Caz, No the fibroids didn't shrink for me. I had three same procedures hydroscopy (I think) to remove them in stages. I had acupunture for a while which worked for the symptoms, not for shrinkage! I am very sure nothing worked for me because I had them for at least 10 years. I thought it was the side effects of having 4 children, my last pregnancy something was picked up during the ultra sound, but it was never investigated further. I am very lucky to have my children. I feel great sorrow for those younger ladies who are struggling to concieve.

      The procedures were a little over two years ago. Unfortunately I have all the symptoms again apart from the bleeding as my uterus was burned (sorry I do not know the name of the procedure) but I would not recommend it for those wanting to concieve. A hysterectomy was suggested, but I still rather not have one yet. I'm going to start with accupunture again.

      I hope it settles down for you. 

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    • Posted

      Thanks Sarah. It sounds as though you may have had an endometrial ablation (burning of uterus lining) after the hysteroscopies. I'm sorry to hear the symptoms seem to be returning but totally understand your desire to avoid a hysterectomy - I too am trying to avoid one! Hopefully the acupuncture will work for you again. I did try an acupuncturist last year but it didn't help with my symptoms ie. Heavy bleeding.

      Yes, I too feel incredibly sorry for all the younger women who still want to conceive. It's another level of anxiety and complication.

      Thanks again for your support Sarah.

      Caz

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  • Posted

    Hi Caz, sorry to hear that you're having such a hard time with Esmya. You definitely can't man up! You've probably been doing that right up until taking the esmya - women are tough like that :-) I think I was off work for about a month when I was on it although I was already off work following a blood transfusion due to haemorrhaging bleed and having a rotten time taking Noresterone (not sure how to spell it). Then I had the worst continuous bleeding for two weeks which I was warned would happen. During that time and after also suffered from nausea, dizziness, greasy skin with spots and huge tender boobs! But the bleeding did eventually stop which stabilised my severe anaemia although I continued to take my three iron tablets a day! When u went for my post-op discussion. I glimpsed my notes and the main fibroid that had been causing me so much bother had shrunk from 10/11cm down to 6!

    Good luck with your treatment whatever you decide and do your homework prior to agreeing not to anything.

    Big hugs and hope you feel much better soon xx

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    • Posted

      Hi Sporty Chica

      Sooo great to hear from you as your experiences almost mirror my own. When I haemorrhage at Xmas my hb dropped to 8.4 but no transfusion so was wiped out for most of January. I was then put under a consultant who was really shocked I hadn't had a transfusion. I too was on norethisterone (and tranexamic acid) to stop the bleeding. Consultant was concerned about a withdrawal bleed so did a 2 week slow wean off the norethisterone and also managed to reinsert the coil. (Amazing man - the last one I had was put in under general anaesthetic but he did it painlessly with just a camera). Needless to say, the coil came out with the bleeding but it had been in for a month and I think did it's job in that although the bleeding was heavy it wasn't as bad as normal.

      Sorry for rambling. So I was off for a good 6-7 weeks after the haemorrhage, got back to work for 2-3 weeks and I've been off the last 2 weeks with starting the Esmya, bleeding, anxiety, tiredness...etc. Will try and see my GP Monday.

      How was your period when you came off Esmya? I'm terrified about that being really heavy and possibly haemorrhaging again.

      What treatment did you have in the end and how have you been since?

      Thank you so much for your support. I'm finding this all so physically and emotionally exhausting.

      Caz

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    • Posted

      Sorry I also meant to add that you had a great outcome from the Esmya with such a big reduction in the size. Wow! From 10/11cm to 6cm. That is really encouraging. Thank you for sharing!
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    • Posted

      No need to apologies for rambling it must be such a relief to speak to people who understand and have been through it.  You have been through the wars haven't you.  What you are experiencing is normal - who wouldnt be anxious not knowing when and where they might haemorhage and may be pass out!! So staying in feels like the safest and most comfortable option. The main thing is that all our bodies are unique and react differently to the various treatment options available so it doesnt necessarily mean you will experience the same thing. 

      My period wasnt great when i came off the esmya and i had a 6 week gap before i had surgery. I wont go into the gory details on the forum as i'm still a bit traumatised. but i did have a normalish period after and then unfortunately i had another big bleed and needed 3 units of blood.  So i basically stayed on tranexamic acid until surgery so they didnt need to cancel my surgery. 

      I had a total abdominal hysterectomy in the end. It was the best thing i could have done as i had no life and was living in constant anxiety of what might happen at home, on the street or at work.  Luckily for me my big bleeds happened at home. I didnt realise how ill i was until after surgery when i felt a million times better only a few days after surgery. It is a physically and emotionally draining condition which we try to muddle through as best we can and people do not realise how debilitating it can be. I was so exhausted from the anaemia.  I would get home from work - a desk job and have a 'nap' which would usually end up being about 4hours, have some food then go to bed and wake up exhausted - i have no idea how i managed to drag myself into work and carry on although i was also able to work from home at times too so being near my own bathroom helped reduce my anxiety levels!

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    • Posted

      Thank you so much for all of this sporty Chica. You are right, it is an incredibly debilitating condition - both physically and mentally. It's actually the anxiety I'm struggling most with at the moment, along with the tiredness from the Esmya.

      God, you have really been through it haven't you. It's no wonder it feels like yesterday. I really do believe that there's an element of post traumatic stress disorder there from the haemorrhaging. I'm not surprised you went for the hysterectomy as I have a feeling that may eventually be my only option too.

      That bleed you had after the Esmya, your fibroid was down to 6cm then wasn't it? That's scary. I'm hoping to try and arrange a scan for when I come off the Esmya as I know that if it hasn't shrunk sufficiently then I'll be at risk of ending up in hospital again too. I wonder if there's anything that can be done to get me over that period - norethisterone again?? Tran acid? Coil?

      How is life with the hysterectomy? Have you had to have hrt? Has that been OK?

      Thank you so much again for your support.

      Caz

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    • Posted

      Yes i guess i have been through it a bit - I played it down at the time so as not to freak out my family, mainly my mother. I couldn't manage her anxiety and stresses as well as my own but on reflection it was major! If you find hysto being your only option eventually, again do your research and check out the hysterctomy association website, i didnt see it until a month or so after surgery but it has lots of useful information and women at various stages, from conseration down the line, pre-op, post-op through to those years post op.

      The bleed after the Esmya was once my fibroid had shrunk.  I was unaware of this as there was no scan done again and found out from a post surgery appointment a few months later. I think the big bleed was mainly due to the build up of the uterous lining while i was on esmya.  What is the gap between you finishing the esma to having surgery? Some women have had esma prety much back to back with a small break in between. Some women have said it is now licensed for two rounds and others longer.  If norethisterone worked for you then that could be a good option.  That's what consultant wanted to give me but once i explained the symptoms i had when on it then my only option was tranexamic acid which was given in consultation with my GP.

      Life after hysterectomy is so much better than before. Post surgery recovery was much better than anticipated and experienced very little pain. I had much more stronger pain when i was first diagnosed with fibroids! But you do have to listen to your body and post op advice. I definitely feel much better.  I only had my uterus and cervix removed so i still have both of my ovaries which continue to provide me with hormones. So there has been no need for hrt.  In my histology results post-op i was told that i also had adenomyosis which has similar symptoms to fibroids so highly likely this made my symptoms more extreme.

       

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  • Posted

    You're welcome! I exprienced this in 2013 but it still feels like yesterday!  You're right your experience is much like mine.The first time I haemorridged and felt terribled went to A&E they said the same with similar haemoglobin level and asked who my consultant was but i didnt have one at the time so they referred me back to my GP aould consider the coil.  From the reseach i had done i really didnt want to have the coil and tld my GP i would condsider it only if i had another scan. Luckily she agreed and found she wouldnt be able t insert it as the main fibroid was at the top of my cervix and only then referred me to a consultant in the hope it couled be put in under anaesthetic! I had to chase up this referral and  took over 3months. In the meantime I had another major bleed and fainted at home alone.    I contacted my GP in the next couple of days as it was the weekend and had a blood test My haemoglobin levels had dropped to 7. from 11 (results of a previous blood test a couple of days before) in days so had 2 units of blood. Haemoglobin levels of 7 ad below is the usual trigger for a transfusion. I know how you feel. I too was on tranexamic acd and mefanamic acid.  Noresterone was horrible i couldnt leave the house on that medication.  I would bleed v heavily for 2 hours every day i was on it and also passed huged clots at that time too.  Then i would be completely clear and dry for the rest of the time! The time this hapened varied very single day! I was terrified of eakthrough bleeding when the course was due to end but started the esmya so didnt experience it.

    sorry this is so long feel free to PM me!

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