Saturday, 17 May 2014

Hysterectomy for PMDD by Jennie. Readers Q&A

A question about Hysterectomy and a response from Jennie, who has had a hysterectomy for PMDD.
Many thanks for creating such a great website.  I've just begun the hormone treatment but I've decided if this doesn't work I'm going to have a hysterectomy.  Have you had this done or decided to just live with it?
Uterus Body Painting by Bethany Roberts
I personally decided not to go down the hysterectomy route,  I tried out the Zoladex injections for 3 months and became very ill.  It was the blackest 3 months of my life and I ended up with many more sucidal thoughts than normal.  To help the withdrawal off the injections and to try and stabilise my mood, I was given lithium.  The whole experience was terrifying.  Having said that, I didn't have great support while I was on it.  No 'experts' looking after me, so it was a very unpleasant experience in my eyes.  I had got to a point where I believed there was only one way to go.  Only one option left.  Surgery.

When the hormone therapy didn't work for me I was devastated, I thought my life line had been cut.  But things changed, I began to change, and I found other ways to live with and manage the PMDD.  It's not easy, but with my body free from all medications I can be more in control.  The decision to live with it rather than go down the surgery route has been made easier with the easing of symptoms and family support.  I work with my cycle now, my life has been transformed and I am glad I didn't go for surgery.
To give you another view point, I passed your question over to Jennie Webster.  Jennie has been working really hard to raise awareness in Scotland for NAPS and PMDD in general, and she has always supported me and my projects.  Jennie recently had a hysterectomy and spent time on hormone therapy, so  I felt she was better qualified to provide an real honest answer about going down that route!
Jennie writes;
I spent nearly 5 years on hormone therapy to treat my PMDD. I used GnRH (Gonadotropin-releasing hormone) Analogues which are injections to shut down the ovaries, stop the menstrual cycle and induce a medical menopause.

These injections worked really well for me and whilst I had some issues regarding the add back HRT, I felt more like myself on this treatment than I ever have. I couldn't take any form of progesterone whilst on the injections so I had unopposed oestrogen for many years.

My gynaecologist kept a close eye on things enabling me to have regular ultrasounds to monitor my endometrium (womb lining). For a while, everything was okay but, eventually my luck ran out and I was told I had hyperplasia which is an overgrowth of cells on the endometrium. Because it was so severe, the only treatment option available to me was a total hysterectomy. I had been avoiding this surgery for years but knew that I would go down this path eventually, however, it still came as a shock.
I had the surgery in November 2012 and I don't regret it for a minute but I am now in surgical menopause and it's no picnic. I had my ovaries removed during the operation (the ovaries are responsible for the production of hormones which cause PMDD) and this means that I was thrown into menopause overnight.
I started my oestrogen only HRT again but as it takes a while for the blood levels to even out and due to previous reactions to HRT, I have to take it slowly. It’s a fine balancing act which I am only too happy to spend some time doing, but in the meantime, my body is crying out for oestrogen. I am having hot flushes, headaches, night sweats, joint pain and extreme tiredness which are all well known menopausal symptoms. I am also having mood swings (swinging between happy, sad, angry and more, rapid style) which is all down to hormonal imbalances. It seems unfair that I have spent my life suffering because of the hormones that my body produced and now I am suffering because of the hormones I am putting back in to try and have a healthy life. I am hoping to have this balance achieved very soon.
I need oestrogen to protect my bones and heart as I have gone through the menopause at a young age.  Swings and roundabouts. Every time I catch myself feeling low I try and turn my thoughts into happy ones but I’m finding it hard as I am still tired from the surgery.
The surgery really is the last option, the end of the road, the only documented real “cure” for PMDD, but I urge anyone who is considering it to be 110% sure that this is the road they want to take. It may be stating the obvious, but it's irreversible. My ability to bear a child has gone forever, I will be on HRT for the next 20 years and I run the risk of osteoporosis and premature heart disease.
There are many other ways to manage PMDD and, in my opinion, surgery should be seen as the very last resort.
Would I do it all again if I had to? Absolutely, but everyone is so individual. Please, if you are considering the operation, ensure you have thought long and hard about it and make sure that it is the right decision for YOU.
My thanks to Jennie for sharing her story.  I hope that helps some of you considering having a hysterectomy for PMDD. 

3 comments:

Jennifer Stephan said...

You should always test your hormones first before deciding on a treatment so you know exactly which levels are affecting your cycle. http://test-at-home.salivatesting.com/ has a cute PMDD video too and good info on testing.

Alisha Jose said...

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Ceil Stevens said...

I need to know how to get help. I have had pmdd for 30 years and no doctor has ever tried to help, now I am in menopause which is made much worse when you've had pmdd and I still can't find a doctor who will even take me seriously
What do I have to do? Put a gun to their stupid head and say,help me your life depends on it? How does everyone else get help? I'm truly ready to kill someone.

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