Bleeding for a long time

[Halifaxmum]

Hello all !

I had the microwave endometrial ablation back in Feb because of heavy periods, it did nothing. The consultant won't do a hysterectomy because the 1st out of 3 tests for von Willbrand's came back positive. His only other suggestion was a Mirena, which I definately do not want. I'm 40 and have 2 kids, not having any more!

My periods don't respond at all to Tranexamic or Mefanamic acid and I get anaemic a lot. Norithesterone and the pill just made me bleed non stop for 2 months.

Just in the past few months, my periods are now lasting anywhere from 2-3 weeks (with the odd hour/few hours with no bleeding) every 4 weeks. When the bleeding stops, I get the PMT for a week!

I'm sick of having to find a loo at least every hour wherever I am. Today, it's day 13 and I've bled all over my trousers again. This is really getting me down.

Does anyone have any suggestions at all? Please! x

[boxtops]

I do feel for you Halifaxmum, I was never as bad as this but I had really heavy periods every month, and in the end it was discovered that I had large fibroids (which weren't there when I had the cervical smear a few months earlier). That was enough to get my GP to refer me for hysterectomy.
I didn't know the VWD condition so I googled it - here is the Wiki page http://en.wikipedia.o...on_Willebrand_disease

If you scroll down to Theraphy, it does offer suggestions of treatments which can enable surgery to take place. I wish you well with it - beastly rotten thing to have to put up with. I remember well not being able to travel for half the month, every month, just in case.

[Sqad]

<<<My advice: go to see your GP and quite politely put the position to him and ask if a second opinion would be helpful. Don´t barge in and tell him that the medical profession are a load of w@nkers, as some ABers would do, as hat would just put his back up.<<<<

That was my opinion that I gave about 6 weeks ago and it still remains the same.

The "fly in the ointment" is WWD....does it or does it not exist and one needs to know and a further blood test would sort it out.

[LazyGun]

I would second the opinions already given - Get your GP to arrange for a second opinion.
Endometrial ablation has been shown to reduce the incidence of mennorhagia hence its popularity, but the results on those patients with vWF have been equivocal.

von Willebrands can be thought of as being in the same family of disorders as haemophilia, and for that reason surgeons are understandably worried about procedures that may offer the potential for severe, uncontrolled bleeding in patients with an underlying disorder of their coagulation system - but vWF is well recognised, and there are methods for controlling it - such as the use of drugs which stimulate the release of factor 8 ( DDAVP), the use of synthetic blood factors both before ,during and immediately post surgery,

You should not have to live with such an impaired quality of life - definitely go back and try to arrange with your GP for a consultation with a Consultant Haematologist and a secondary opinion from other O/G surgeons.

3 references for you that may be of help/interest;
http://medical-dictio...on+Willebrand+disease
http://www.nhlbi.nih....D/vWD_Treatments.html
http://onlinelibrary....1900+SGT+to+210

[rowanwitch]

Ask to see a gynae consultant at a hospital that also has a large haematology department or has better links with one.....you might have to travel some distance for this but worth the effort to be seen by someone who knows he would have the resources at hand to manage a 'bleed*r'

The haematology department at my trust supports the local orthopaedic hospital when they do joint replacements on heamophilia sufferers and the local womens hospital for Gynae stuff.... Not sure where your nearest big centre might be.,,,,

So far as the day to day management of the bleeding....suffered from simlar problem most of my adult life. at worse two nightime pads at a time changing every hour or so..try combining tampons with large incontinence pads rather than sanitary towels as they cope better with the 'flooding' the other trick is don't stay in one position too long as it is when you stand the blood that has pooled comes out in a rush the pads cope better if the flow is steadier... hope that wasn't too much info for other readers

[Sqad]

Halifax.....just have feeling that you are in the Calderdale Group and I agree totally with rowan and lazygun.........I cannot convince myself that you have VWD so how about asking your GP to refer you to Leeds General Infirmary which has a well recognized Haematology Unit.

[Halifaxmum]

Thank you all for such helpful answers.

I will get myself back to the GP (I have been struggling these last few weeks, as my depression has kind of taken over me).
Sqad - the haemotology dept at Bradford R.I have written to me saying they want to see me - they have some sort of specialist dept and a register? Anyway, that's in Nov.
I'll go and see what they say and let you know!
Thank you again for your support and advice - it really is appreciated. And thank you for not telling me to shut up being a moaning minnie! x

[mumof3angels]

Hi Halifaxmum. I really do sympathise with you. I was not as bad as you but I too suffered from heavy long periods and, like you, could not be too far away from a loo. For the last 4 years I've had examinations (even under general anaesthetic) but to no avail until Feb this year when my male gynaecologist retired and I saw a female gynaecologist who recommended the Mirena coil and was shocked I hadn't been offered it. I was sterilised after my 3rd child but had been on the pill to try to 'control' my periods to no avail. I was so desperate I said I'd have one fitted. 6 mnths later I have seen 1 'period' that lasted 4 days and was so light that a thin sanitary towel was fine to use.(Sorry to be graphic but you'll understand how great that was!!!) I can't recommend the Mirena enough-is there a reason you don't want it? Just thought I'd give you my opinion-hope it helps. :)

[Halifaxmum]

Hi mumof3
I just don't like the idea of it being there all the time - a foriegn body, also I've heard people say they can feel it, it can move and cause a lot of pain and your partner can feel it, if you know what i mean!