fibroids ruining my life
Posted , 21 users are following.
Really need some advice from from women who have fibroids. Really struggling. I have severe bleeding 24/7 (clotting), nausea, back pain, abdominal cramps. My consultant put me on gonapeptyl injection for 3 months which stopped the bleeding and improved my quality of life but that was only temporary and 3 months has finished now. Dreading this all over again. Want to start a family in next year or two. Contraceptive pill doesn't work and doctors don't want to operate because I'm so young and have no children. I have 5 fibroids in total. Where to go from here?
0 likes, 43 replies
essjaybee
Posted
I really feel for you kb112. For me it is different, I had my children 21 years ago so for me, after all other options had been exhausted I had a hysterectomy and I have to say it is the best thing I did even though 2 weeks down the line I am still swollen and sore.
My first port of call would be to see if your consultant could prescribe Esmya to try to reduce the size of your fibroids and this would then possibly enable a Myomectomy as this would leave you the option to try for children.
http://en.wikipedia.org/wiki/Uterine_myomectomy
Do you know the size of your fibroids and position of them? This also has a bearing on the treatments that are available to you.
phoebewhite essjaybee
Posted
Out of interest, were you at any point prescribed iron supplements?
billie68174
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essjaybee
Posted
I know you say you want a hysterectomy but please remember that this will impact on your ability to care for your husband for quite some time, do you have anyone who can help you with the care while you're recouperating??
I hope you get something sorted soon x
billie68174
Posted
lynne84973 billie68174
Posted
I am in very much the same position as yourself. I have a large fibroid (when last measured it was 19cms) that is causing me a good deal of problems - heavy bleeding, clots, headaches, flushes, cramping. You name it I've got it. My husband is a lot older than myself (almost 83) and I dont feel I can leave him on his own. I also want a hysterectomy but my doctor told me this week "hysterectomies arent very fashionable at the moment". I went to hospital and had a pelvic ultrasound yesterday, but the sonongrapher couldnt see the lining of my womb because of the fibroid. I now have an appointment on Wednesday (3rd Sept) to see a gynaecologist at hospital, so I dont know where we'll go from there. Anyway, I wish you all the luck in the world and would just say keep pushing for what you want and sooner or later (hopefully sooner) you will get what you want.
essjaybee
Posted
I seemed to have more results with the Norethisterone combined with the Mefenemic & Tranexamic Acids than I did with anything else but nothing really worked properly. I was lucky in as much as my GP and my Consultant were both very sympathetic to the suffering and pain I was experiencing.
It can take up to a year as the A&E nurse correctly said but if your symptoms are worsening then they can bring treatments forward if necessary. They had to with mine as my bleeding became constant with no let up and I was experiencing periods of flooding which were quite traumatic.
Is there more than one GP at your practice? If so, you could try seeing one of the other doctors who may be more sympathetic to what you're going through??
Failing that you can complain about your treatment or lack of it either through the practice manager or if that is not a route you are comfortable taking then you could complain directly to NHS England (I have the address if you ever need it).
There is also the option of contacting your PCT and going down the self referral route also if they are still not listening to you and under the Choose & Book rules you can also choose which hospital treats you (if you have a choice of more than 1 locally that is).
I know you may probably be aware of some of these options but if not, then I hope the information I gave can help you in some way.
I am here if you need to talk and wish you all the best Billie x
ella81
Posted
I' m suffering pain nearly a year, because of my fibroid.
I went to see a gyneacologist and he put me on medicine for 3 months.
But I fed up allways waiting 3 months - 3 months - 3 months, it's nearly a year mow!
Have you got any suggestion? I just want to rid off that monster inside me and have a normal
Life!
kb112
Posted
essjaybee
Posted
There is a forum on here relating to the Esmya titled 'Esmya Tablets Fibroid Treatment'. It's quite a long thread as it has been going for quite some time but most ladies seem to get very good results from the Esmya.
For me it worked in shrinking my fibroids slightly but sadly not enough to relieve my symptoms but from what I can establish in the thread this is rare. My consultant is very impressed with the results that most of her ladies are getting from it, I think I was just an awkward case for her from start to finish.
As I understand it, with gonapeptyl your periods can take up to 2 months to restart but if you're concerned I would ask your consultant.
Please keep us informed of your progress. I am 4 weeks post op now from my hysterectomy, still feeling tired and drained but so much better than I was, I didn't realise just how ill I was before this.
I feel so much for all you ladies who are still being affected by fibroids, I've had people say to me 'it's only womens problems, why are you making such a fuss?' Unless you've experienced the problems they can give you, it's hard to understand that the symptoms go beyond straightforward 'period pain'
kb112 essjaybee
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billie68174
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tracey78180 kb112
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kb112 tracey78180
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kb112
Posted
janice98461 kb112
Posted
Hi Kb112,
Firstly stop using tampons, I found that when I was using them they made my periods heavier and with a lot more clots.
Secondly if your flow is as you say you'll have to do what I did and that is switch to incontinent pads as they are thicker and more absorbent. I use the tesco and morrisons brand. For bed time I use incontinent pants (they're like knickers) by tena lady, night time ones are great they allow me to have a good night sleep with no leaks. You can also wear them during the day if needs be. Give it a try.
And thirdly red meat. I've had to cut it out of my diet as I found it aggravated my firbrod. When ever I ate it regularly my period would be very heavy and last longer too.
Hope some of what I said helps.