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Newly diagnosed adenomyosis and endometriosis......scared please help

(13 Posts)
rainbowkids Sat 14-Jun-14 19:53:25

After years of pain, prodding and poking by doctors I have eventually got a diagnosis and proves that I'm NOT losing my mind and the pain isn't all in my head. So Thursday I was diagnosed with Adenomyosis and Endometriosis on right ovary. Also was given the Decapeptyl injection every 4 weeks to put me into medical menopause, then on HRT (Livial) when second injection is due. I am 38 have 3 perfect children so not worried about having anymore. But definitely want rid of this constant pain, fatigue and mood swings. Gynae wants to see me after 3 months to discuss what the next step will be. If the injection has taken away my pain then options are for me to probably have a hysterectomy or I could stay on this injection alongside the HRT. Has anyone else had or is having this injection or a similiar experience please. I appreciate everyone is different so it won't be the same effect on all but any advice or experience would be grately appreciated please as I'm very scared about what's going to happen to my body but at the same time also hopeful that I can see a light at the end of the tunnel for my long suffering pain. Anyone please help............ sad

rainbowkids Sat 14-Jun-14 21:19:09

Anyone please?

Willdoitinaminute Sat 14-Jun-14 23:53:11

I had zoladex for 6 months and it was a blessed relief. I opted not to have HRT it just seemed a bit daft to stop my own hormones then take artificial ones, but that was 14 years ago and treatment regimes change I was also trying for family. After 6mnths I had surgery to zap the lesions and eventually had DS. I was advised to have Mirena coil fitted and have had one for the last 8 years. I know that they are not without side effects but after 20years of problems it was a small price to pay. I not longer have periods ( used to be 8 days of torrential flow) and no pain.
Good luck with treatment. Hysterectomy might be the route to go in your situation although it depends whether you have a lot of ectopic endometrial lesions. I had a lot on my bowel and bladder so these needed treatment. I still have problems with certain foods (orange juice is probably the worst) that causes bowel to become very irritable.

rainbowkids Sun 15-Jun-14 11:24:31

Thank you for your message Willdoitinaminute. I know it was a while ago you had the injection but how were you on it. What side effects did you have. I'm guessing the side effects are worth putting up with if it relieves the pain. Well this is why I'm torn between just maybe going to hysterectomy after the 3 months, but obviously I need to see how my body reacts to the injection. After all the gynae did say we couldn't be sure right now if we could keep my ovaries as only 1 of them is ok the other 1 has endo. I'm just seriously so fed up of being in pain....it's soul destroying x

Cocolepew Sun 15-Jun-14 12:44:04

I had a hysterectomy for this, it was the best thing I could have done personally. I was so swollen and sore and couldn't work for nearly a year.
I had my ovaries removed as well, one was full of cysts, but I thought there was a chance, if I left one, somehing would happen to that as well.
I was 44 and will be on hrt patches until I'm 51, then it's up to me whether to continue with them.

The injection and Livial didn't agree with me at all.

Cocolepew Sun 15-Jun-14 12:45:49

A friend had the same problem and kept her ovaries. A year later she had to have one removed and its looking highly likely the second one needs to come out as well.

rainbowkids Sun 15-Jun-14 13:30:06

Thank you Cocolepew for your message. What I'm doing now is trying do all the research I possibly can and get it all laid out for me so when/if I do see the 3 months through the Decapeptyl injection and Livial I can decide then what's the next step. But one thing that I'm not doing is living with this pain anymore.

Cocolepew Sun 15-Jun-14 13:37:51

There is an ongoing hysterectomy thread, I think it's on it's third thread now, that might help smile.

rainbowkids Mon 16-Jun-14 22:17:18

Thank you x

Willdoitinaminute Mon 16-Jun-14 23:23:15

I only really remember mild hot flushes. Having no periods and a lot less pain was great. When the treatment was completed and after further surgery things were much better but periods were still heavy. As I said the mirena coil has been the best treatment by far. However if you are finished with having babies a hysterectomy might be the solution. If you have lesions outside of your womb these will still bleed each month if you leave the ovaries so you need to discuss this with Gyni.

Willdoitinaminute Mon 16-Jun-14 23:24:52

Have you had a look at the endometriosis support site the forums there are a good source on information particularly re experience of hysterectomy.

Reredos Mon 16-Jun-14 23:43:19

I had six months of Zoladex after my last endo operation ten years ago. The Mirena coil was inserted during the op and I am now on my second one. I have had endo for 28 years and used to beg for a hysterectomy but my gynaecologist was adamant that the Merina would be enough. I have to admit that he was right (but never to his face as he was a pompous, arrogant man). I am now 47 and definitely peri-menopausal with no symptoms other than occasional light bleeding.
I would advise you to try the treatment. A hysterectomy is a huge operation with a prolonged recovery time, especially as you have 3 children. The only side effects that I had from the Zoladex was hot flushes. I tried HRT for one month but it made me itch!

rainbowkids Tue 17-Jun-14 12:41:34

I've had the coil and it made my pain even worse. I have been on the endo site Thank you. It's so frustrating because I have both and there isn't one at thing that can sort both out. On my 5th day now since injection and feeling run down and exhausted, pain is more frequent now than normal. But I am expecting my body to take few weeks to settle. Hoping it works for me x

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