I’ve got a consultation with an endometriosis specialist end of February and I’m hoping to try and get excision surgery for some long term relief.
Has anyone ever had one excision surgery so far that’s given them long term relief and not had to have another one yet? Or know of anyone? 😫 I see so many negative stories and not many positive ones and it makes everything so hard to come to terms with.
In the meantime, I went to see a general gynaecologist, who put me on evra patches. I have only been using them for 3 weeks and not noticed much of a difference yet in terms of my symptoms.
Everyone says I need to give it some time, maybe 2-3 months and then I will notice improvements. My endometriosis is on my bowel, so I’m wondering how a patch is gonna help with that? Could it possibly shrink it or mask my symptoms in the meantime while I get my appointment sorted? I’ve been given very little info on it and I’m soo confused.
Has anyone else ever been on these evra patches & do they help with symptoms?
I wondered if anyone reading had any more information on birth control and endometriosis suppression just for my own knowledge. So that maybe I could find a better alternative. Or know if I’m on the right path.
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Amywoodx
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I had only one ever surgery, and that was laparoscopy incision for stage 4 endo in my uterus, ovary and bowel. I have just had my 3 months followup and had a mri in december and was told yesterday I havent relapsed and that I am completely endo free. I had my surgery in August 2019, was diagnosed in 2018. Mine was so severe I had 9 hospital admissions within 14months to control the pain. I was put microgynon but recently stopped as my migraines got severe, I am now on Noriday. I had my first period on this pill and had no pain. Since my incision surgery I have had no endo symptoms and cut out mayo completely.
My surgery was done under a endometriosis specialist centre. You can look up to see where your nearest endo specialist centre is on the bsge centre website. Pop your postcode and it will give you a list, note at least 3 closest ones to your gp and ask them to refer you there. within 3 months you will have consultation, mri and booked in for surgery.
It's worth remembering that those who find surgery /something else works for them. May no longer be active on forums about endo as they no longer feel effected by it. Do unfortunately this does paint a more one sided journey.
So hormonal contraceptives however it's administered won't reduce the endometriosis growths. But some do find that the hormones helps with the symptoms but this is just a mask. It's as endometriosis can be effected by the fluctuations in hormones in our bodies so the thinking behind contraception is that it limits the amount of fluctuations on our systems. But this doesn't work for everyone and there's not a rhyme or reason to know if it will help and if so which is the best one for you.
Hey!! That’s a really good point actually, sounds stupid but it does help with the process knowing that there are probably loads of people out there who are managing just fine and that’s why they don’t come on here and we don’t see that side of the story.
Thanks for your help, I hope my contraceptive patch will help to at least mask my symptoms until my consultation at the end of feb as it’s getting really difficult now. It’s also my mental health that is struggling loads too, literally wake up every morning feeling rubbish and crying my eyes out lol x
I’ve was diagnosed 4 and a half years ago now! Had two operations over that time. I found I only had relief from the op for around a year max after both ops.
I haven’t ever tried the patches, but it seems my consultant has put my on every other thing!
I started with the pill, however I still got periods on that, so offered no relief what so ever.
Following my first operation, I was put on a 6 month course of the prostap hormone injections. These were very affective in stopping my period, but almost put you through a fake menopause. They messed with my head so much, and still had the pain as soon as that six month was up!
I then had the implant, which, just like the pill offered little help at all!
I had my last surgery November 2018. On that operation, they inserted the coil - now I haven’t had a period since then. Which is a bonus! And it has, to a degree helped slightly, in my eyes.
My biggest turning point last year was internal physio - although very very painful at the start, and at every appointment, I felt a few long-term benefits. However, as the pain died down a little, I find myself left out to dry again! The second you say you haven’t had pain that week (it was a very good week indeed), they think they can write you off! But you past 2-3 months have been excruciating and I find it harder now than ever to get any help of my consultant / gp
Oh wow sounds like a big journey, did you have excision surgery? I would’ve thought it’d give more relief than a year 😩 does the amount of time depend on how severe your endo is too? Say if someone has stage 1/2 endo and has it ALL excised, will they feel relief for longer?
Both operations I have had have been excision surgeries.
I’m not sure if it depends on stages to be honest. I think it may have to do with how quickly your body recreates that endo tissue I guess. It’s also down to placement on where it is found. Some areas I guess can be more painful - and if it has, in essence, stuck certain things together. I think it really varies person to person
The pain i am suffering currently, I would say is a lot worse now, than even before my Surgery in December 2018.
Yet the GP/consultant believe there is not much more they can do other than a hysterectomy which I do not want currently, as I am only 24 with no children. I have tried all forms of contraception to aid pain. Prostap injections. Chronic pain clinic. Hydrotherapy. Physio therapy.
The only thing that currently relieves pain for a short amount of time, is a simple hot water bottle!
Hey, I had excision surgery. I did however have it twice but not because it came back but because I needed a specialist for my second lap. I've written a post on my experience before, during and after lap, to date, so about a year and a bit on. It may help and saves me repeating it all!
I've had the contraceptive arm implant put in again 8 days ago now and I have had it previously for many years about 9 years but this was before my endo excision recently. So, I am Not getti g on with it this time at all headaches bloating pain it's horrible I'm going to have it removed to see if it helps me. I don't have a partner anyway so I don't need it.
Why the implant is not agreeing with me this time after all these previous years of having one in I'm unsure of, but the only change is my recent endo excision surgery which has had a massive impact on me tbh.
I hope you find the right contraceptive aswell but everyone is different so just listen to your body.
I would say no major change in moods etc is good but If your still in pain then it's not really helping much and to try another method there are many nowadays so just book a appointment with your gp's contraceptives nurse to discuss methods.
Have you found any sort of relief after your excision surgery or is it hard to tell because of the implant? maybe the implant is doing more harm than good and you might find that without it you’ll do just fine!! Hope you find something that works for you and thanks for the info/advice x
Tbh it's been a long recovery time I had surgery excision for stage 4 endo around 4 months ago and I feel worse than before my surgery. I'm going back again for my second post op check up next week so will see what's going on then.
I'm just finding tiredness a massive issue , some bloating , and sharp pains still.
I am waiting to talk with a nurse about possibly getting the implant removed, it's been in for8 days.
So much us women have to deal with ..
Good luck with all , you should have endo removed if your offered excision as it should make you feel alot better.
It can take up to a full year (not 6-8 weeks) to heal internally properly so just mentally prepare yourself first if you go for it .
It’s also wise to think that some people are walking around and don’t even know they have it like I did for 3 years I also read it takes 3 years before symptoms show up so it’s possible that people get relief and it comes back years later in that time people are non the wiser and getting on with things there’s a lady on here didn’t know she had it till she tried for a baby and couldn’t conceive she didn’t have severe periods it all seemed normal to her same in my case I’ve only just lost a baby 1st misscarrige and was having severe pelvic pain 2month prior before that I had no idea
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