Long-term experiences of being on depo provera for more than 2 years....

[la_beth]

Hi,

I've now been on depo provera for 7 years. I was unofficially diagnosed by my GP with endometriosis at age 22, but because I'm not sexually active, the women's health specialist at the hospital I was sent to refused to do any kind of surgical investigation because she deemed there no point in doing a laparoscopy unless I was trying to find out if I was fertile.

I have been lucky - after 6 months my periods did stop, and though I still struggle with IBS type symptoms there has been none of the passing out from pain, anaemia etc that came with ovulating and menstruating that I had before. I am now however, beginning to get spotting and finding that I have a permanent dull ache in my lower abdomen and back, and the occasional stabbing pains that I used to get before.

I'm also worried that my body is ageing more quickly as a result this sounds really vain, but I'm finding that my hair is going grey (it starting greying after about a year of being on Depo) - this isn't something that runs on either side of my family. My hair seems to fall out a lot more, and even beginning to find my pubic hair is balding (sorry TMI!). I gained about 2 stone in weight - going up two dress sizes and over the last few years my breasts have started shrinking.

I am wondering if I should come off Depo, but I'm terrified of having periods again. But also wondering how being on Depo long term for many years has affected other women under 30?

Thanks

[mrs-devious]

I was 18 when I was eventually diagnosed with endometriosis, it was such a relief as my GP had pumped with with lots of different things, I got to the point where I though I was making it up! Mine was not typical, I could have my pain every day. I tried various pills which had no effect and started on depo within a year of diagnosis. Apart from a period of 3 years when I had my boys I have been on it virtually ever since. I am now 42. Sadly once I was diagnosed two of my aunts then spoke of their issues with endo, my mum was diagnosed at 46, she just thought what she dealt with was normal, and my older sister also has this, PCOS and fibroids.

I had several laparoscopys to remove the adhesions, I would get relief for approx 6-12 months. I then started suffering with what I can only refer to as fall outs, even though being on depo I would not just bleed through but if you didn't know what I suffered with probably would have thought I was haemorrhaging.

I tried two different coils, the first I had removed after 2 weeks of constant bleeding and chronic pain. The second my surgeon fitted in outpatients the marina which apart from the fact they didn't cut the cords short enough self ejected and I was losing clots the size of apples. My last surgery I asked for an ablation (this I can only compare to a boil in the bag feeling), they also did a hiscoscopy and a laparoscopy but had to abandon because it was so severe. My surgeon referred to it as imagine someone making a hole and pouring liquid concrete in. The ablation has been my only relief from the fall outs and wish I had had it years ago. My case has now been referred to as chronic. I also tried the implant in my arm, that made my weight increase even more rapidly.

I tried zoladex for 3 months last year, apart from making me very moody I was still on my depo so didn't feel that it was giving me a true representation, but the worst part was the pain was worse. Again this included more weight gain.

I am allergic to a lot of pain killers including paracetamol and codeine, so I was lucky to be referred to a pain management consultant who was very understanding. I now have bupranorphine, I only take this when I know I would not be able to get up the next day and go to work, it knocks me out and I sleep through the worst of the pain. Because I have been on depo for a very long time, I also take calcium as I have osteoporosis in my family and have a bone scan every 2 years to monitor.

Through my own research I have seen that like me a lot of women also suffer with an under active thyroid and at times a vitamin d deficiency so ladies who I have met I have said that they should get this checked too. As along with the endo which can be very draining and tiring both of these do too.

Although I am overweight and know it is partly the endo and the depo I try and think that I am lucky, I had two boys who won't suffer and there are people out there who suffer with far worse. I know if I allow them to operate it is highly risky and I could end up with a bag to poop in.

I do find mine is triggered by stress, since having my two dogs (Italian greyhounds) they know before I do and they have this way of making me stop, relax before carrying on. I know that depo long term is not necessarily good for me, but life without depo I would not be able to work, support my family, especially my boys. It is a hard call to make and no one can make that decision for you but it helps to ask how others get on.

Best wishes