At age 25 I was diagnosed with endometriosis on my ovaries following a laparoscopy. I've always had extremely heavy periods lasting around 10 days and at worst needing to change an orange tampon every 45 mins. I also suffered from terrible constipation and shoulder pain during a period. I had to use a TENS machine for abdominal pain.
My husband and I tried for 3 years to fall pregnant with 2 failed rounds of IVF. I was very lucky to fall pregnant by chance after giving up hope and now have a beautiful, nearly 3 year old daughter. We feel our family is complete and do not want any more children
I expected some kind of relief after giving birth and my periods returning (I had been told that from various people and my consultant) but my symptoms became worse. Mainly abdo pain and heavy periods resulting in me not wanting to leave the house.
I have tried various conservative medical treatments such as zoladex, the coil and depo injections more recently. The coil and depo injections left me bleeding daily. This obviously has an impact on our sex life and sex now can be painful.
After a discussion with my consultant early this year, I am now on the waiting list for a hysterectomy. I felt that this was my only hope for a normal life and freedom from this bleeding every 4 weeks. He was very understanding and has said that at the last minute if I decide not to go through with it he will just do another laparoscopy.
As the time is fast approaching and I am just waiting for a phone call with a date I am now starting to question my decision to have a total hysterectomy (ovaries, tubes and cervix) and be on HRT.
I desperately would like to hear from other people about their decision making process in what treatment is right for them and if hysterectomy is the answer, how has it been?
If anyone can give me some advice I would be very grateful! Thank you!
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Ailsa8
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Hi, I am going to have a total hysterectomy next week. My periods we're awful too, 10 days of heavy bleeding with enormous clots (sorry TMI). I have had a laparoscopy and have been on the pill for nearly 30 years, but lately have had to stop the pill due to bad anxiety and depression. Tried a number of different pills with no luck. As soon as I stopped with the pill my symptoms came back worse than ever so I have decided to opt for a hysterectomy. I am being treated at a BSGE by one of the leading endometriosis specialists in England and I am very happy with his approach and his care. He told me he was happy to do another laparoscopy but felt that a total hysterectomy (with excision of all remaining endo of course) would give me the best results. To be honest, I have hated my uterus since I was 12 and have wanted it out for a long time. The only redeeming factor has been my two kids, but now that my family is complete, I can't wait to see it gone. I know it is radical, but the thought to 10 more years of horrendous periods makes me depressed. And I can't use tampons, so yeah...fun times. Need to be close to a toilet at all times. I will let you know how I get on with the hysterectomy. Oh, and I am 39, so still quite young to have a hysterectomy.
Hi Ailsa. Think very carefully before having healthy ovaries removed! If they look nasty (as in likely to become cancerous) then fair enough, it is probably as well to have them out. However, 33 is young to be without your own oestrogen and androgens. I had a LVAH and BSO in February aged 51 and it was discovered that my right ovary was fine. I have oestrogen only hrt gel as I have osteopaenia. However, I could do with some of my own androgens as my energy levels are lower. There are specialists who carry out excision surgery and it may be a battle to have this on the NHS however if endo can be removed from your ovaries and everywhere else, it is worth asking whether your ovaries can be preserved. Don't forget - although oestrogen feeds endometriosis, it is not the bad guy here - the endo is the bad guy!!!
I won't name surgeons who specialise in this field however if you google 'Total Peritoneal Excision' you will find articles listed that will provide names and case studies.
Hi Cathy. I think the surgeon I am thinking of (Halifax, Yorkshire area) does see patients on the NHS however I think it is for women who live in his local health authority area. Also, not sure if private medical insurance pays his entire fee. Always worth checking. Have just had an NHS consultation with my local BSGE centre which I am happy with for the moment.
Hi, I had a total hysterectomy last July for adenomyosis and I must say it's wonderful not having periods every 3 weeks😉,
I kept overies as they where healthy, but nfortunately I still experience pain most days, not as bad as before but still bad enough to alter my life choices,
Endometreosis needs to be removed by a specialist on the bsge list, is your consultant on it, ???
I'm awaiting another laparoscopy to see if any endo was missed as I'm sure it was,
And my consultant has mentioned taking overies too, I'm 40 so would need hrt,
I'd recommend taking a look at hysterectomy associations website as lots of info there and the forums helped me through my TAH and BSO in Feb 2015.
I'd second making sure your surgeon is BSGE approved and if not get transferred to one. Mine wasn't and he left endo behind believing it would die off as ovaries removed - it doesn't!!!! So I had another lap but still in loads of pain and v tired and depressed.
Now with A BSGE clinic and they took me off HRT (I was 43 when had op) as felt oestregen only or combined HRT were feeding endo so am trying with nothing for now. I'd had a bone scan and that was normal and I take Menopace and other herbal things to help menopause symptoms.
As I had v heavy periods and adenomyosis and ovaries badly affected I'm glad it's all gone but do wish Id seen specialist BSGE so that endo was removed properly and then hopefully I wouldn't still be in this pain 18months later. And maybe I wouldn't have lost my job and be unable to work thanks to pain and tiredness.
I've been recommended a hyst plus removal of ovaries by the bsge centre I am being seen at - I have extensive Endo, bowel Endo, adenomyosis. However I am probably not going to have it - I am 38 and although I don't want more children, it is such a final surgery. It cannot be undone. I am hoping they will be able to excise enough of the Endo to reduce my pain to a more manageable level and I will be happy with that. I accept that I'll never be completely well but a hyst wont leave me completely well either. Rock and a hard place.
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