Absolute misery!

Posted , 12 users are following.

I have a soccerball size fibroid. It is causing me so much misery. I'm constantly idepressed. And I suffer panic attacks all day. I just need someone to talk to who can relate...

0 likes, 55 replies

Report / Delete

55 Replies

Next
  • Posted

    I went through what you are feeling earlier in the year. This site is brilliant for reassurance and help. Fibroids I learnt are very common and a lot of people don't know they have them. However, it can be a shock when you find you have one. My largest is about size of 4 month pregnancy and could be responsible for constant nerve pain. Have you been given any tablets to shrink fibroid? Is it causing discomfort? Keep posting and asking questions - it definitely helps. 
    Report / Delete Reply
  • Posted

    Thank you so much for replying. I have not been given any meds. Besides pain killers and my medical aid will not pay for any procedures. I'm always tired. Always sore. I'm filled with hopelessness....
    Report / Delete Reply
  • Posted

    Would your medical aid pay for a drug called to istral to shrink the fibroid? I'm not familiar with the health system where u are. Are u in USA?
    Report / Delete Reply
  • Posted

    Hi Melanie

    Sorry to hear you are going through this really tough phase. It is really difficult when you first find out.   The tablets mentioned below are esmya ( the doctors will know it as ulipristal acetate 5mg daily) it has been used before as the morning after pill in a different dose. That may be one option you could discuss. Let us all know how you get on.  

    Report / Delete Reply
    • Posted

      Hi Melanie, Sorry you're in such pain and discomfort, not to mention the stress. I have had multiple fibroids for about 9 years now and was waiiting for menopause to kick in but it never has. The fibroids just grow, and I bleed.

      However taking Esmya (ulipristal acetate) has really helped ease the symptoms and shrink the fibroids somewhat. The problem is it is not suitable for long term use, usually for 3 months before surgery. Yes it has side effects, maybe headaches, dizziness to start, possible weight gain, and menopause like symptoms such as hot flushes. When you stop taking it the fibroids grow back again quite quickly.

      I started taking it then opted out of surgery ( was only offered total hysterectomy, vertical cut as my womb is so large, and maybe complications due to blood loss). 

      I am now in my 3rd course but don't know where to go from here, possibly investigate UFE, which is being discussed a lot here.

      Report / Delete Reply
    • Posted

      I have tried shrinking it naturally. However cutting out meat, sugar and dairy isn't that easy. I feel terrible emotionally and physically. I have wanted kids for so long and now this monster is destroying me and I don't know what to do. They say money can't buy happiness. But if I had money I would get UFE and my life would change for the better. I just feel like crying all the time.
      Report / Delete Reply
    • Posted

      Hi Christine, are you in the UK? Because here the licence for esmya has been extended now. It is no longer just for pre-operative. They can be used for longer term intermittent use. This is only since 2015 so may not have filtered through everywhere. My gynae approved my second course of treatment on it and I can take again I believe after a 2 month gap or maybe even after a longer gap. I am going to see if I get any results after the second set of treatment before deciding. I may even try some complimentary therapy next myself.  Best wishes

       

      Report / Delete Reply
    • Posted

      Hi, no I'm in Spain. I have been able to obtain Esmya here on my original prescription ( the private ones are not dated here, you just use the same one over and over, I do it for blood pressure tabs too), and am on my 3rd course, but I have to pay for them and they are really expensive (£150 pm), so it doesn't seem a good long term option! My gynae only wants me to go for surgery now as she believes it's the best option, so I haven't been back to see her for months.
      Report / Delete Reply
    • Posted

      Hi Melanie, there can be side effects but these are generally very mild. Of course everyone is different. They are generally headaches and a bit of dizziness when first start. Also some tiredness. I can not vouch for everyone of course. For me I would say the side effects are worth it if there is going to be some reduction in the size of the fibroids and hence a reduction in symptoms. I take the tablet late at night as it sort of makes you tired and then you can go to bed and just wake up OK in the morning and carry on with your day.      I am a few weeks into my second course of treatment with it. I took for 3 months and had a gap of two months and now thought would give it another go. I dont know if mine have reduced in size as have many smaller ones (plus one of 5.5cm subserosal). It stops your periods whilst on them so that is a good thing if you suffer heavy ones and are prone to anaemia as a result. I am looking for a reduction in pelvic pain. Not yet achieved for me. It may be because when fibroids are breaking down that can cause discomfort as well so I just have to be patient and give it time and hope. Hope is a good thing we all must have that.      
      Report / Delete Reply
    • Posted

      yes I know what you mean, I thought about the dieting option but it's so severe and the people who say they have managed to shrink them through diet also rely heavily on supplements which I can't easily get.

      is Esmya an option for you though on your medical aid? I have medical insurance but it excludes pre- existing conditions, so fibroid treatment and even the hysterectomy I'd have to pay for myself.

       

      Report / Delete Reply
    • Posted

      Hey christine.i think best is just get an operation.

      Taking esmya and then stopping will not be if any help.

      It took me lots of guts to take the treatment and operation later and now i see the results

      Report / Delete Reply
    • Posted

      Yes that's right I would have to pay, but it's not just that, it's also the language barrier ( I speak some Spanish but not enough to be comfortable with medical conversation). And the fear of complications due to the large fibroids and having to have a vertical cut,  with a long time recovering. Oh and also the loss of sexual pleasure if I have a total hysterectomy.
      Report / Delete Reply
    • Posted

      Hi Christine.  I was told i needed a hysterectomy but i refused it(that was in the Caribbean).  Have had a second and third opinion and have just had an open myomectomy 5 weeks ago.  I had to have a vertical incision due to the size of my uterus.  Due to extensive blood loss he was only able to take out the 4 largest fibroids but after some very painful days when i tried to do too much i am doing well now i feel.  Your body tells you when you are doing too much so if you listen your pain quickly settles.  I am 46.  Cant wait to start driving again haha.
      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up