Go with your own gut!!! You know your bod... - Endometriosis UK

Endometriosis UK

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Go with your own gut!!! You know your body better than anyoke.

Suzied2b profile image
9 Replies

Hi all, I just wanted to say that I feel you should always go with your own instincts. After I got sterilised on June 17th 2015 I suffered daily with lower abdominal pains that didn't go. After 46 Dr's apps I finally got referred back to my consultant and under went disscussion about what it could be. He then said it sound like endometriosis. He gave me options if going on the pill, having I junctions to stop my ovaries from working or surgery. I told him my body doesn't take the pill that well anf opted for the injections, the only downfall I could only have them for 6 monthso and would then need a 12 month break. The prostap injections were amazing they stopped my periods and my pains. 6 month came I wasn't allowed anymore. My periods returned August/September 2016. As did my pains. I then said I would try the pill just to shut them up and cross another option off the list.. I attempted to take my own life I stopped the pill. I self referred myself to the pain clinican at my local hospital. My 1st appt the consultants assistant couldn't believe my old one hadn't put me forward for a laparoscopy. I eventually had this done in March 2017. They removed my tubes aso endometriosis was present on one and in he uv fold, the endometriosis was treated and removed. I felt great for 2 weeks then noticed pains again. In may I caved and gave into my GPS advise to give the Mirena coil a go. My last hospital appt in June they said they would see how I get on for the next 3 month and go from there if pains were still there they would try me back on the prostap ando if my pains dissappear they will discuss the removal of my ovaries.

So anyway since then I've put up with the coil, that I haven't noticed any good things, I have period pain now that I never got, I have periods/spitting for 14 days instead of 6. I have agonising pain on ovulation and I'm basically bed bound. I had a cyst 5 week ago which got bigger and ruptured, i ended up in hospital. My next appt wasn't till end of Sept, Ian aged to bring that forward 2 week to the 12th. I've now decided that I cano wait that long. So this morning I rang my doctors and asked them to do me a prescription for the prostap so I could get started on it before having to wait 2 week. The driver was hesitanot but I manage to get her on my side. Luckily the chemist had the injection in. So I went back to the Dr's and I'm getting the prostap injection injected tomorrow and next Tuesday I get my coil removed. I'm glad I took the chance and acted myself to move things forward. As I said you know your body better than anyone believe in your instincts and act on it. I cannot wait to start the prostap again and hopefully it will work again and then I can get my ovaries out.

Xxxxxx

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9 Replies

Ah bless you . You have been through so much . Glad you have managed to get some treatment that will hopefully give you some pain relief x are you being treated in specialist centre for endometriosis patients ( i.e. bsge) these are centres that are accredited to treat endometriosis . If not please ask your doctor for referral to see if they can provide you with some more support . They normally have a nurse and supports groups . Take care xxx

Suzied2b profile image
Suzied2b in reply to

Hi it's not a specialist centre just your normal hospital. My gp who has helped me is an ambassador for endometriosis and has helped me feel a bit better at some things. But I guess you know your own body better then anybody and I'm glad I was able to start the next lot of injections myself rather than waiting for hospitals. Xxx

Starry profile image
Starry in reply toSuzied2b

Glad you've got a medication that works. Xxx

As it's your second lot and close together I recommend you ask for a baseline bone density scan as that is why they recommend the breaks as it is proven to reduce bone density and make bones prone to breaking easily. .

Also worth seeing if you can transfer to a BSGE specialist centre where the surgeons have specialist Endo and excision skills training

bsge.org.uk/centre/

Suzied2b profile image
Suzied2b in reply toStarry

It's been over a year and that's what they suggested as the time to leave it before a next course of treatment. Xx

Starry profile image
Starry in reply toSuzied2b

It's best practice before you start at all hun

Suzied2b profile image
Suzied2b in reply toStarry

I'd probably have to wait months on a waiting list for one of three scans. I'm having my injection today so I don't have time to waitime for one. And I'm sureally they would of suggested it to me if they thought there was anyour concerns. Xx

Suzied2b profile image
Suzied2b

Just had a little read up on it and I couldnt find anything to say I'd need one just one. Maybe in a few years when I've had my ovaries but not yet. It's mainly for older people and women who have had there ovaries removed before the age of 45. Xx

Starry profile image
Starry in reply toSuzied2b

Glad you've checked it out and are happy with your risk profile.

I mentioned it because I wasn't warned about the risk by my doctor's or surgeons at all, it turned out I do have a high risk profile and subsequently did have a bad experience, so it can and does sometimes get overlooked/missed by clinicians. Just wanted to check you were aware is all.

Good luck with the treatment and hope it goes well for you.

Suzied2b profile image
Suzied2b

Thank you. I just hope it works as well as it did last time. Xx

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