Newly diagnosed

[Kimbarl]

Hi everyone

I have just been diagnosed with Endo after having a Laparoscopy. I had it on the right side of my womb. I don’t know the extent of it and have my consultation in 4 weeks time. My gynaecologist removed what was there (to my knowledge). Even though she has removed it is there still a chance it can come back? If so would it be in the same place or can in be in other places?

Like I said, I need to have my consultation so I will get more answers then and will ask these questions, but I was just curious.

Thanks xx

[Hidden]

Hi Kimbarl,

Unfortunately, endometriosis does return and can start to spread again every time your womb lining grows as part of your monthly cycle. There is a chance of it growing back in either the same or a different place (or both). There are medications that can be prescribed to lessen the chances of it returning but these cannot be taken if you are trying to get pregnant. Have a look on the Endometriosis UK website for more information - it really helped me.

B x

[Kimbarl in reply to Hidden]

Thank you very much Beabee. I’ll give it a read. Xx

[Ilogn]

Hello,

I also got my diagnosis with endometriosis yesterday after having symptoms for just over 4 years. Endometriosis can return after being treated surgically and maybe not always in the same place. Are you having any other treatments? Hormonal or complementary? Have a good discussion with your doctor and see whats possible.

I've had the mirenna iud put in and am going to start physical therapy once I've recovered from the surgery.

I hope you're recovering okay from your surgery. I feel your pain and know it can be a struggle.

[Kimbarl in reply to Ilogn]

Hi Ilogn

I had my Laparoscopy today. I have only just returned home. I had the Mirena IUD put in also, and I and a biopsy from my womb.

The pain is pretty bad but I’m getting through.

What does physical therapy entail?

Xx

[Ilogn in reply to Kimbarl]

I had a local anaesthetic into my abdomen as well so pain didn't feel too bad until tonight. Im not sure about the exact ins and outs of physical therapy but what I've read and been told by my doctor is they'll give me exercises to manage my pain particularly the pain I have during sex. (Sorry tmi haha).

I'd recommend reading up on endo as much as you can. This sites great but I also use myendometriosisteam.com it's a us site but women from all over the world use it and it's full of support and advice x

[Kimbarl in reply to Ilogn]

We I’m healed I think I want to start doing yoga. I’ve stumbled across a few routines especially for Endo and pelvic pain.

Have you read any books on Endo? Any recommendations?

[Ilogn]

That's a great idea ive been thinking of trying yoga. books wise endometriosis uk have a book due out in March I think. I've pre ordered it. Reading wise I've been using a Facebook page called nancynook.

It's full of articles about pretty much everything endo related. I've found that really helpful. Theres a lot of in depth articles about the basics of causes and treatments but also more specific things eg diet hormonal treatment etc. Take a look. It's a closed group just ask to join and answer the 3 questions. There really straight forward just ask you why you want to join.

It also had a list of highly skilled specialised endo doctors worldwide. So that's always a good resource too x

[Codielatoya]

Unfortunately hun it grows back. I had my first endo removal in 2016 and have since been diagnosed with stage 4 endometriosis. Its now classed as dangerous so currently receiving hormone treatment until next app in April when I will then be booked in for a hysterectomy. I'm only 26. I have tried absolutely every treatment there is and it just keeps spreading so its the only option for me as it could become life threatening. But honestly if one thing doesn't work then keep trying them and hopefully you will find one that will suit you, I'm just one of the unlucky ones. I really hope yours stays settled for u xx

[Kimbarl in reply to Codielatoya]

I’m so sorry you are having to go through all of that at such a young age.

I’m 27 and only just been diagnosed. I’m not sure how bad mine is but I know that my gynaecologist burnt all she could see.

I hope you’re pain and symptoms are relieved after your op.

Kim xx

[Codielatoya]

Its such a horrible illness. I hope you get on ok xx

[NH88]

One of the biggest hurdles has been over come. You have had a diagnosis. Unfortunately it can grow back...as a woman you produce more estrogen than a man and that feeds endo.

I have been told that during our monthly cycles we produce more estrogen than any other time and so we fuel the endo that is in our bodies.

If your consultant is an endo specialist they maybe able to provide you with ways of controlling your symptoms and even delay another build up...but as far as im aware no cure has been found although research is ongoing.

I had a full hysterectomy and oopherectomy with cervix removed after just turning 28. I had to do everything private...my gp wasn't interested and it took a long time to find a specialist endo consultant in an area i could get too. Through family history i already knew how serious it was and what would happen if i was continued to be ignored, so i sorted it out myself.

Good luck with your appt.

Let us know how it went.

We are here to support you as best ee can.

Head ups x