New here...: Hello all. I'm a newbie so... - Endometriosis UK

Endometriosis UK

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WRUfan profile image
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Hello all. I'm a newbie so thought I'd give you a bit of background and ask a question or two...I am 43 and was diagnosed with endo in (I think 2006) after I couldn't get pregnant. It wasn't a big surprise as I've pretty much always suffered with painful periods. I had an operation in 2007 and all the endo was cleared then. I know I had the best surgeon possible as not only is he in the top 4 or 5 in the UK ( and a tertiary referral specialist) he's also a friend!

Last year I was diagnosed with a fibroid as well.

Anyway, as I sit here with a hot water bottle I wonder if any of you have had any luck with complementary therapies. I've had acupuncture in the past (for other reasons) and found it excellent and am considering it and other things...nutrition maybe? The truth is the Mirena has been recommended but I'm not keen. Partly because I'm worried about side effects and have been told I must give it at least 6 months to settle, partly because I have a tilted uterus so am concerned about insertion and partly because I'm finding it a little bit hard to accept I'll never be pregnant - I am getting there though! One of the reasons why I need to get sorted is that each month my flipping hormones scream that I want a baby even if my head is saying no; it's too late!

Thank you for reading; it was a bit on the long side!

Welshy.

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WRUfan
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WRUfan profile image
WRUfan

Me again! I just read another post about someone who was worried because she wants children and I thought I should add that I also have a blocked tube so please don't think that because it didn't happen for me, it won't happen for anyone else!

Chippers profile image
Chippers

Hi Welshy,

I'm guessing from the name you're in Wales? Genius I know! I mention this purely for selfish reasons as I wanted your Gynae specialist to cover Cumbria!

Back to you, Im 45 and was exactly where you are 2 years ago, emotionally and physically. They offered my the Mirena but I refused, mainly because of the children issue. I knew it wouldn't happen but I couldn't be instrumental in preventing it from happening, if that makes sense?

Two years on and this years so far has been nightmarish, continuous period for 4 months solid, then Cerazette for 2 months ( wouldn't recommend as I was so ill off it- severe pains in uterus and aggravated endo on a leg ligament). One week off it and I'm haemorrhaging to the point my partner wanted to take me to A&E last night. Im hoping its just a build up from the pills and the Norethisterone will work its magic later today.

I've had laps and laser ( which is being offered to me again even though its an old-fashioned procedure) and my GP is so eager to inject me with the menopause drugs. However, having done my research and spoken to some really helpful women on here, I have concluded that there is no real cure and its likely to return once you stop with the injections. What's the point of putting all those chemicals into your body if its only a short-term fix.

So, I cut out caffeine, not made a major difference in 2 months, but its g to to be a good thing. I take B6 to keep me level, which so far so good, painkillers when needed and Norethisterone to stem the flow. Im constantly looking for ways to manage it myself holistically, so it would be great to compare notes.

Oh and the child thing....... This is the first year I've actually thought that it would be too much for me to cope with, given my physical state. Holding down a job is hard enough.

Hope this helps a little. Keep in touch.

Linda

WRUfan profile image
WRUfan in reply toChippers

I'm not used to this site so have replied to you and C at the same time but I think if I do this then you'll get a notification email...???!!!

Chrissie66 profile image
Chrissie66

I think people underestimate the emotional problems with the Mirena at our age

We had a recurrent miscarriage problem - 18 in 10 years - and through all of that I was pouring with blood every month. It hurt and it drained me and although every sensible bone in my body was screaming at me to do something about it because even though we'd been through every single recurrent miscarriage treatment known to man I absolutely resisted the idea of a Mirena because in my head that was me giving in.

Then one morning I woke up to another brown envelope with an appointment for another round of treatment and I just thought "I can't do this anymore". It had got to the point where I was almost cutting off my nose to spite my face.

My lovely, lovely gynae had supported us all through the miscarriage treatment - and we did some weird, expensive stuff in exclusive private clinics in London that in hindsight was never going to work, and she knew that - but she also knew that we had to do it, and that I had to reach the decision to stop. And when I did, she totally understood when I sobbed and sobbed, not because it hurt as she was putting it in (because she made sure she did it herself and was very gentle - I have a tilted uterus too and like you my cervix has never been opened by childbirth but she did it under local anaesthetic and it was no more uncomfortable than you would logically expect it to be, honestly) but because she knew as well as I did that it was the end of something.

Six months later, when the bleeding had completely stopped I knew I'd made the best decision, if only because I was no longer rushing to Boots for pregnancy testing kits practically the moment I ovulated. Having just that part of it taken away was a HUGE relief, although I'm not going to lie, it took me a while to get my head around it. But now I'm on my second one and it's the best thing I've ever done.

So don't have that Mirena put in until you are ready. And I promise you, one morning, maybe soon, maybe months or years ahead, you will wake up and a switch will have clicked in your head overnight.

And besides, who knows - they might find a surefire way of allowing fifty or sixty year old women to have babies by the time we get there! (I'm joking, obviously; could you imagine?? The poor kids!)

Good luck, and lots of love

C xxx

WRUfan profile image
WRUfan in reply toChrissie66

I'm not used to this site so have replied to you and Linda at the same time but I think if I do this then you'll get a notification email...???!!!

WRUfan profile image
WRUfan

Linda and Chrissie, Thank you both so so much for your lovely posts. Reading some of the stuff on this forum I think I have got off lightly compared to many - my periods have never been heavy and only really last two days! But the pain is awful and the horrible light-headed, fuzziness is one of the worst things. Both of those things last longer than the bleeding. I can also have bad ovulation pain which I see as my ovaries laughing at me. I'm not sure how I could have had "extensive endo" as diagnosed before my op but not suffer with prolonged, heavy bleeding but that's me.

L - Actually neither me or my consultant are in Wales! I'm from there but currently live in Derby and he is in London. He usually only takes referrals through consultants (hence the job title) but the one I tried in Derby refused! My GP then messed things up and it all ended up in my favour as the practice manager got involved and my referral was successful. My friend would have waived his fees had I not been able to see him on the NHS but he recommended I try the NHS first as all the the other costs of private care are still very high and unpredictable.

C - what you wrote about when you had the Mirena fitted made me cry; "it was the end of something". So true. Finding a way through is difficult and very few people really understand. I am so sorry for all your losses; they must have broken the hearts of you and your partner. I also know what you mean about "giving in" - I take my battle with my laughingly named reproductive system as a very personal one and have often said I won't let it beat me. But maybe I'm just harbouring resentment that will feel very freeing if I let go? It's a disease after all...

Back to my original questions re. diet etc; I haven't drunk caffeine for many years but do eat it in chocolate but that must be a smaller dose as it doesn't stop me sleeping which caffeine now does. I don't like coffee so only drink decaff tea and if you want something natural and gorgeous I highly recommend Teapigs. A bit expensive but I buy in bulk online and couldn't go back to the other stuff now! They don't do normal tea in decaff though as it's not natural so I buy that elsewhere. I'm also vegetarian (have been for 20 years) but that doesn't mean I'm especially healthy - just been to M&S for Yum Yums!

I too don't like the idea of filling myself full of chemicals and hormones but sometimes needs must. If I can find another way though, I want to try. Comparing notes would be great.

Thanks again to you both,

Welshy.xx

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