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Endometriosis UK
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Hysterectomy and temporary menopause!!!!

I have been in bed for 4 days and I am in agony I just don’t think I can cope with this anymore. I am 34 and feel like I am 80, my grandparents have more life then me. I am going to go to the gp tomorrow and give my consultant a call to discuss having a hysterectomy or the menopause injection. Does anyone have any good /bad stories of them. I know these may not help but at the moment I am willing to try everything. We already have 2 children and have been hoping for a third before this happened but I can’t carry on anymore.

Thanks

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Hi I’ve been given the decepeptyl injection, it will last three months. You can have lots of different ones that are one a month too, I’ve been on it just over a week. My pain has halved but I’m getting muggy headaches but find cold and flu medicine helps with them ( nothing else’s did) also in the mornings my bones ache quite a bit , and then again in the evening. But I’m going to start a bit of yoga and walking to see if that helps. I’m in early days but so far so good xx

Hope you find some relief soon

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Hi Ria,

Last month I had the one of my worst pains as well as vomiting and flooring pain, I'm 33. In a Nutshell I've had a lap, but they found nothing, which I believe they missed the endo. So I haven't had a good time with NHS as the lap took months to receiver from. So I have turned to alternative treatments because I have no other option but I have found they give me 70% reliéf as well as using pain relief. I Take a supplement called DIM, as well as milk thistle daily, and acupuncture once per month, but I missed it last month didn't take it daily, so the pain came back with vengeance. Apparently the DIM makes your body filter out the estrogen which makes the endo grow, estrogen kind of acts like a fertilizer to scar tissue. That's my perception of it, but all I know is I can't be without it, as I truely feel the difference in pai levels when I do take it. Thought I'd let you know, in case you wanted to tackle it with all sorts of ammo and still have the possibility of having children. Good luck girl xx

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Hello Ria29

Sorry for your struggling and hope you will be well very soon.

My wife has a temporary injection for 5 yrs and she started taking it before about 7 months, sofar she good unless some side effects which i don't think a big issue, especially you have kids.

However, the best adviser will be ur doctor.

Best wishes

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I took zoladex for 5 months and although it didn’t stop my periods, it helped massively with the pain and other symptoms. I did have add back HRT and didn’t suffer any noticeable side effects from the injections

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First of all, You are not alone... and I am so sorry to hear what you are going through. I know this is long, but I hope you find some answers...

In 2014 I had excruciating pain in my abdomen, the doctors said it was a hernia. Nothing showed up on the ultrasound. I allowed the doctor to keep insisting it was just a hernia, even after a huge lump had formed outside my belly button the size of a large marble, 6mths later. In 2016, I was in so much pain during period and ovulation time, and then the lump began bleeding. I changed doctors... he immediately told me it was endo, and a week later it was excised. But, 6 weeks later it had grown back. This time internally and the same size as before. I had to go on a waitlist. 6 mths wait, and I went in for surgery for the 2nd lump removal. I was out of commission for 2mths, could barely walk. But it grew back again, and worse still we moved house. I have since seen 4 doctors, 3 of which did not believe me. One told me I was just overweight - I am a size 34 waist and 5'7... My migraines and exhaustion are unbearable. But I was fortunate to find a doctor who got me on a specialists waitlist for endo. I had that appointment last month. And sure enough, the endo is back, BUT it cannot be seen on any ultrasounds. I have had transvaginal and regular usual ones. Only the MRI shows up the lumps. I have never had a laparoscopy either.

The type I have is seen in less than 6% of endo cases... but it DOES EXIST! NEVER let anyone tell you it doesn't. If you feel unwell and you know something is up, go find a doctor who believes you. I took with my studies, reports, research, and even other forum stories from women with similar symptoms.

I have 2 lumps growing under my armpits size of golf balls, which are also endo, several pea-sized lumps scattered around my abdominal wall, and a few spots in the muscle of my upper thighs near my pelvis. But none in my reproductive organs. Yes, there is a lot of pain each period and ovulation. But at least I now know it isn't in my head.

I am on the list now for a hysterectomy... I am 40 y/o. The specialist prefers to do a hysto vs the meno injection.

I will get to keep my ovaries to prevent early onset menopause. If you keep you ovaries you won't go through meno too early. I know of at least 10 other woman in my area who had this type of hysto and have never felt better. They all look beautiful, lost weight, got rid of their migraines, and the endo stopped growing. Fingers crossed that is the result I get too. ;-)

I just wanted to share with you how a different story can lead to some answers that might help. Do some research on xenoestrogens... if you are sensitive you could be absorbing more than your fair share throwing all your natural ones out of whack. Endo grows with estrogen just like Anchi629 said above... you can try natural progresterone cream and DIM is GREAT for estrogen detoxing.

We, women, are in this together... we are here to help each other, to support and enable each other to get through this so that we are NOT alone.

Good luck chickadee... xx

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Hi. What is DIM please? Thanks

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I am on the injection with HRT add back. It has helped with pain but I still have bad days nine weeks on. I have quite a bit of joint pain so still feel like an old lady.

I’d like a hysterectomy but I think my consultant would prefer me to stay on the injection. I can’t see a compelling reason to doing that - I hate pumping my body full of chemicals. I’m 36 with two kids and consider my family complete.

Interesting to see some people’s doctors prefer surgery over the menopause drug! I wish I could understand why.

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Hey

I have been having zoladex injection once a month for 3 months all my pain stopped I've had no side effects and I have actually lost bit of weight. I have now got to wait for my specialist appointment to see where I go from now as I was only diagnosed few months ago. I would recommendation this ad it worked for me but I no we are all different, I jus wanted to let u no what worked for me.

Hope u get it sorted soon. And no your not alone!!

Much love

Hayley x

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Thanks Hayley, it’s so hard to know what to do as everyone has different experiences on these drugs but I am going to try everything I can now as I can’t keep living like a 80 year old

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Your welcome just hope you get it sorted. I know exactly what your going through think we all do. I've been living like that for years with my family moaning why are u ill all the time, like i like feeling shit everyday and not being able to get out of bed. There needs to be more done in the research into this it's a joke that so many ladies are living their life in agony and it's just not fair.

I hope you find your peace and know we are all in the same boat and we are all here to support and help each other xx

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History - started with abdo pain (2012) and ended up with a lap (2013) which only found adhesions (general gynae). Fine for 18 months then things started back again. Saw lots of Drs (colo rectal, gynae, urology) then ended up at endo specialist in 2015.

I tried the menopause injections (ProStap) before my surgery. I had 3 months worth and no add back. It made no difference to symptoms, dried out my hair and made me a bit moody. Removal of my pelvic congestion affected ovary and tube, removal of endo and adhesions gave me life back for 2.5 yrs.

I have had pain start again earlier this year and when I saw the consultant it was decided that hysterectomy was the way forward at 41. As I get lower right side pain the Dr feels my remaining ovary may be a problem so it's coming out. everything out in the hope that there is nothing to grow endo and less for adhesions to attach to. I have decided I will take HRT.

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I had my hysterectomy 9wks ago and never felt better (had everything removed). I’m 40. Actually feel I have a lot more energy.

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That’s great, have you had any menopause side effects

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Had a few sweats in hospital, started on HRT patches on day 4 and no issues at all.

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That’s so good, I bet you are so relieved. I just don’t know what to do, I keep going backwards and forwards. Thanks for the help

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It is a hard decision to make and I was an emotional wreck before surgery. Already have my 12yr old but was so wanting another. If I didn’t have op then though surgeon advised I would be doing it in a couple of years so rather than multiple surgeries with no real gain it made sense. Really weird knowing your period is your last one too.

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Hi I have had hysterectomy a week ago and feeling great. But going through the menopause and on HRT but it takes awhile to settle down. But feel great since the op at the moment. Still early days but taking one day at a time.

😊😊😊😊

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