Still in pain😟: Hello everyone. I'm new to... - Endometriosis UK

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Still in pain😟

Tonijane79 profile image
Tonijane79
•8 Replies

Hello everyone. I'm new to this and have found all the posts and support amazing. I finally feel others understand what I'm going through. I've had a laparoscopy two weeks ago and was diagnosed with endometriosis. My gp will not put me on the pill as I was taken off it 5 years ago due to migraines. I have the implant anyway. I really want a hysterectomy as my family is complete and have now been off work for 8 weeks due to stays in hospital and the pain I'm in. Any views on hysterectomy and if it will help?

Thank you

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Tonijane79
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Roxie101 profile image
Roxie101

Hi. I've literally just been through the same. I had my lap on th e 30th and diagnosed with endo. Before the lap the gyne said she would put me on the pill to suppress the endo symptoms. Im a bit concerned about that as I'm 40 and my family is also complete. I can't have the coil as I previously had one and had problems with it so had it removed. I will have to wait now for my post op appointment to discuss ways forward. How are you feeling now after the lap, I'm still struggling with pain, tiredness and lightheadedness.

Tonijane79 profile image
Tonijane79• in reply toRoxie101

Sorry to hear this. It's horrible isn't it. I am still a little sore but it's the pain that they are investigating that is killing me. I've been off work for 8 weeks now as I can't function properly and am in constant pain. I really hope you feel better soon and good luck with your appointment. I've just had my follow up through for June!!!! I can't wait that long x

Jd27 profile image
Jd27

Snap

I'm the same

Do I don't I

Iv been in fake menopause for a year and a half now and I'm having implants on the 12th coz it's not worked being in fake menopause so they are going to trick my body into thinking its pregnant 😫

I'm 36 and I feel so helpless Scared and confused

My surgeon said having a hysterectomy will only stop my periods and all the pain that comes with them

Its are hormones that are the problem as they produce eastorgen and endo feeds off eastorgen so no guarantee its wont come back

It's a lot to take in

Hope you get sorted stay strong and take care xx

barbie86 profile image
barbie86

Hi

Hysterecomies are unfortunately not a sure-fire 'cure' for endo. The success rate depends on a lot of factors: where the endo is (is it only present in the uterus for eg, or does it affect other areas eg ovaries/bladder/bowel?), how severe it is, and so on. If it just affects the uterus and fallopian tubes and you are pre-menopausal it can work; if you are pre-menopausal and other areas/organs are affected it becomes more complicated as they must be sure to remove ALL endo, otherwise it can grow back. Unless you have a total hysterectomy (where they also remove the ovaries; as without oestrogen the chances of it coming back are very small) there are no real guarantees; even with a total of hysterectomy there is still the risk of ovarian remnant syndrome.

In short: I would have a hysterectomy as an absolute last resort. I personally plan on having an elective hysterectomy in about 10-15 years time (I'm 30 now) but I plan to put it off as long as possible as unfortunately it is very complicated, isn't a 'cure', and in some cases can do more harm than good. Just my opinion, though.

Can't really help the hysterectomy part. But I also have a coil (hormonal) and likewise, get migraines so can't take the standard pill. The gynea I saw put me on the mini pill as it's suitable for people with migraines. It's helped considerably. Essentially I have 2 forms of contraception. It may be worth considering for you, if you haven't already.

Tonijane79 profile image
Tonijane79• in reply to

I have the implant and the doctor said it's just doing the same as the coil would? I'm so confused 😢 Just want rid of this pain

• in reply toTonijane79

Snap! It's helped a lot. I think the added hormones? I still have terrible pain, but I can do day-to-day activities. I still have breakthrough bleeding and too much pain to have sex still.. but, I can function. I'm on 75mg of Cerelle daily, with whatever the coil chucks at me, if it helps. It's a POP (minipill).

Tonijane79 profile image
Tonijane79

Just thought I'd update you all...I had a 6 month follow up through but have managed to go private and am now being seen on 20th Jan 😌 He's a specialist in endometriosis so fingers crossed he'll sort me out!

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