Just been diagnosed, unsure of what to do next?

[PennyCrowe]

Hello!

So I finally had the results from my MRI and it has confirmed endometriosis was found.

It was honestly just utter relief. I nearly burst into tears.

I have been going backwards and forwards, having test after test, advocating for myself, being gaslit by different gp's, for years and now I finally I have my answer.

Although I'm now more confused than ever because I really don't know what to do next.

I am really worried about having a laparoscopy, obviously I'm worried about the risks and recovery as I have 2 young children and I'm terrified something will go wrong. And also that it might grow back.

I have tried the hormonal route ( the pill, and Mirena coil) in the past year and I had horrible side effects from both, and a lot of pain with the coil. I would be willing to try again I suppose, my consultant wonders if it wasn't placed correctly.

Im interested in the zolodex injections, but again worry about the side effects.

My biggest worry is that the endo will get worse and grow. It has been found near my rectum and I already have horrible bowel symptoms so I worry it will become more serious over time.

My consultant has been very good from day 1 and has listened and really tried to help get me an answer. He sent me for the MRI as I asked for one as he knows Im not keen on surgery.

If I did go ahead with surgery he would be doing it. But I don't think he is classed as an endometriosis specialist. His speciality is in urology.

There is a specialist centre near me ( Im in the North East) so I don't know if I should ask to be referred?

I think I just feel a little overwhelmed by it all.

love to everyone x

[Sara0102]

I’m exactly the same hun got diagnosed last Friday

[PennyCrowe in reply to Sara0102]

So sorry you are going through this too x

[Scoops22]

feeling the same got diagnosed 2 weeks ago

[PennyCrowe in reply to Scoops22]

so sorry you are going through it too x

[ChicagoGrey]

I’m currently having zoladex, round of 3 before another gynae appt. I’ve had 1 so far and due another in a weeks time ( monthly) I have literally had no pain what so ever! I was in horrible back and front left sided pain, so this is a massive relief! I’ve still had a period and some mild discomfort but nothing compared to how I was feeling. The only side effect for me so far is night hot sweats which are unpleasant but if this is all to be pain free - il take it!

[PennyCrowe in reply to ChicagoGrey]

Thank you for your reply. I'm so glad the Zoladex is helping you x

[MrsPaddingtonBear]

Hello

First breathe and give yourself a hug. If you’re having symptoms that are affecting your quality of life then surgery might help. Quite often they do put you on hormone treatment to try first. You can ask your GP or the consultant about the possibility of being referred and see if they are willing to refer you to the specialist centre. There is never any harm in asking! Good luck.

[PennyCrowe in reply to MrsPaddingtonBear]

Thank you so much for your reply.

It's a lot to take in, even though I've suspected it all for a while.

My consultant is happy to refer me to the specialist centre if I'd like, I just wasn't sure if it was definitely necessary as he is willing to do the surgery. It's all a bit confusing as to what to do for the best. x

[MrsPaddingtonBear in reply to PennyCrowe]

Hi

Perhaps a second opinion with the specialist may answer some questions as they deal with it everyday. I was lucky my consultant was also my surgeon all the way through for years. I refused to see anyone else. We were even first name terms in the end lol! He jokingly patted my head and said doors that way when I was finally signed off for good in January, it was after 20 years so I let him get away with that one. All we can ever do is make informed decisions with the information we can get from the resources we can access. It’s important that you feel comfortable with whoever is going to look after you after all these tests/examinations and surgeries are very personal and invasive in nature and we need to feel happy with those that are going to carry them out. Hope all goes well

[Stitchrunner1]

You ask. The worst that can happen is they say no. If you don't ask, no one will offer. It is literally a pain having Endo. You are now a member of a widespread women's club. I for one feel the pain. Take care of yourself. Make sure you have a good GP. And don't believe anyone who spins you the line it gets better after your babies. That is not the truth. Good luck.