Endometriosis treatment options please help

[xlozzyyxo]

Hi everyone,

I’ve had an appointment today with the gynaecology specialist nurse after I described my symptoms she said she’s more that sure that it’s endometriosis she give me a few options but I’m so scared she said an MRI scan but she was worried about the radiation as I’m 18 she is sending me for an ultrasound to check for cysts on Friday she told me about surgery but said it can cause scarring and adhesions and then she said would I like the coil I panicked and agreed but I really don’t want it I would prefer the surgery to get rid of it rather then putting the coil in to just ease the Heavy bleeding because what about the complications in the future I’m only 18 I haven’t even had inter course so what if there’s infertility issues in 5 - 10 years ? she also said it could be painful to put in I really don’t know what to do please could you help ? I’m already on the pill to stop the bleeding and on mefanatic acid to stop the pain. Shout I push for surgery I know that it could grow back but I’d rather have it gone I’m just really scared there’s so much information to take in and it’s all confusing to me x

[Fizzypoptastic]

Hi there, I'm 41 and I found out I have Endo & Adenomyosis in March 2021. I reacted exactly as you did & agreed to have the Mirena fitted but changed my mind as soon as I had time to digest all the information. I emailed my Endo team & asked them to put me on the waiting list for laparoscopy. I still had to wait a further three months (for my consultation) to be officially added to the list for a laparoscopy though.

I'm on tranexamic acid to help with my periods but I'm not on any other hormonal treatment at the moment.

I also have polyps in my uterus so have decided to go for a hysteroscopy to remove those as well as have the mirena fitted.

I'm still waiting for a laparoscopy & agree that having all the adhesions & plaques removed is a better idea. (Rather than leave things to get worse over time). Your treatment is your choice so please don't feel that you have to compromise. Hope this helps. Xx

[xlozzyyxo in reply to Fizzypoptastic]

Hi thank you so much for replying and helping me I’m glad I’m not the only one I have an ultrasound on Monday and then a follow up with results on the same day so I’m going to push for the laparoscopy and avoid the coil as like you mentioned I’d rather it to be taken away then just taking pills and painkillers especially if they get it whilst I’m young good luck with everything as well xx

[Jane884]

Hi, I also did the same as you and fizzypoptastic, i initially agreed to have the mirena as it was pushed as my best option. I even called back to have it booked at a hospital so I could have local anesthetic, it does hurt, and they don't really give this as an obvious option. After doing some research I decided to cancel and pushed for a diagnostic laparoscopy. Like you, I wanted a real diagnosis and removal of any endo. If they found endo I wanted it dealt with at an endo center and removed by excision rather than the ablation my gynae was offering. As it happens, the endo has attached my uterus to my bladder so I need a specialist centre anyway.

It's your body, don't be rushed into any decisions. Do plenty of reaserch on the subject and push for the treatment you want x

[HappyEl in reply to Jane884]

Ah its not easy to face and make decisions. First though its good that they are taking you seriously at 18 and you have their attention as its gives you time to get the treatment you need, as it can take a lit longer. Take a breath and see if someone you know in person has it or has had it too, that can help.

Take care

H

[Lina2]

Hello, my endo situation is different but I would say that it’s your body and you are entitled to change your mind. Don’t feel bad or worry about it, just tell them your decision. If you feel you need more information before deciding then ask them to explain the options again and ask lots of questions/do some research etc. x

[yellowfreckles]

There is no radiation in an MRI scan, they are completely safe. Only CT scans and X rays use radiation x

[E-ZEE]

instagram.com/p/CZdMmNPsYjF... have look at this link.There are 2 types of surgeries explain in this link,but your nurse sounds it was not endometriosis specialist clinic.Ask your GP to refer you to the BSGE clinic if you based in UK or endo specialist clinic if you outside UK,gernal gyno can ruin your case,don't do any thing before consulting to specialist endo consultant.Second thing if you have endo it is important to know which stage endo and how it effect you.There are 2 ways to diagnose it 1st is MRI as she said and 2nd is diagnistic laproscopy,they just put camera in through key holes.My advice is don't panic and move wisely and smartly.Good luck girl.

[xlozzyyxo in reply to E-ZEE]

Than you for sending the links I’m definitely going to research more into it also the nurse I saw was an emergency gynae nurse so she wasn’t a specialist however she did refer me to see an endometriosis consultant in clinic but it won’t be for a couple of months which is a pain she is also sending me for an ultrasound just to check for any cysts but i definitely feel calmer now that I’ve had some advice thank you good luck to you as well! x

[E-ZEE in reply to xlozzyyxo]

Hi,just use painkillers and hot water bottel for pain until your consultant appointment booked.Most importantly stop overthinking and avoid stress.In your scan if your cyst contains blood(chocolate cyst),it may be an endo.Normal fluid contain cysts are not usually related to endo.

[Sana12]

Hey,

I hate that you're going through that, it sounds awful!! Im 20 and am going through a very similar thing to you! I opted out of any hormonal pills due to family history of blood-clots and the gyna didn't want to risk it. I only really had 2 options to take: either have one of the 2/3 pills he advised which would have a reduced clot risk or go for a laparoscopy. I know it can seem really scary and tbh i don't even know im i've fully registered what im going in for you yet, but the best thing do to is think about there here and now.

I had the same concerns about fertility in the future, as i myself haven't yet had intercourse but when i weight that up with the daily pain and discomfort im facing now, I really just need something to be done. I have opted in for the laparoscopy and am waiting for am appointment. I think you should just evaluate the pros and for your personal circumstances, so a bit of reading around the long terms effects and speak to your gyna/doctor openly, they have a lot of the info to answer your questions!!

Good luck and I hope you're able to work something out soon!! xx