Any advice?

[Rubyangel1]

Hello my name is ruby, I’m 19 years old. I have been suffering with endometriosis ever since I was 13 and the doctors were so sure that it couldn’t be that because of my age, finally when I turned 17 after doing everything else that wasn’t a surgery they did a laparoscopic procedure on me to find out if I did have endometriosis as nothing was showing up when I was having scans. When they did the operation they found that my womb was basically black covered with endometriosis and my bowl organ had been moved into a different place because of it. I was rushed back into hospital the next day because my body couldn’t handle the trauma it went through. For the next 4 months I didn’t have a period and it felt like all the pain had gone and they got rid of all the endo. I was so so happy. After the 4 months they wanted me to slowly start having periods again because of my age so put me on leostrin contraceptive where I’d only have a period every 3 months. After the first bleed, all the pain came back, and over the last year the pain has been getting worse and worse to the point now where it is the worst it has ever been. I cannot do certain things because of the pain and I am constantly in pain everyday regardless of if i take strong medication. Now it has had a mental impact on me as I haven’t been able to give my bf sex in my relationship, as it’s too painful and all I can think about is how painful it’s going to be, and it’s actually made me depressed with the way I think about my body and how i see myself and the fact that I’m 19 and cannot do what at 19 year old can. I am now having to have sex counselling to help with me mentally and am currently waiting to have another operation where they are also going to insert the marina coil in me, it’s been 4 months now I have been waiting and my doctors are trying to push to get it done as soon as possible because they are concerned, and they told me to not have a period again before the procedure so I haven’t had one in 4 months and I haven’t missed one single pill and I have now started to bleed dark and old blood! If someone can just give me some advice or is willing to talk to me about their situation I would be most grateful because I’m really finding it difficult at the moment.

[Missingcat]

I'm sorry you're going through this, it's all a bit shit! Do you have friends or family aware or how bad that it's gotten? Half the battle for me is talking to people, I feel like I always need to have a brave face on.

On the positive side you're doing lots of things to look after yourself. As for the bleeding perhaps a call to nhs24 or your gp would help? It's better to have it checked out.

Hope things get better for you soon!

[Rubyangel1 in reply to Missingcat]

Yeah all of my family and friends are aware of the situation and are trying to support me in the best way they can.

I went and got the bleeding checked out and she said it could be break through bleeding or Maybe a cyst so she gave me an appointment for a scan.

Thanks so much!

[JulesUK]

I’m so sorry you are going through this at your age. I hope the Mirena works well for you it has certainly been a life changer for me. I don’t think it’s unusual to have some bleeding when taking the pill continuously I know I had it when I didn’t have a break. I hope things improve for you very soon. x

[Rubyangel1 in reply to JulesUK]

Okay well that is so good to hear that the Mirena has worked for you because I’ve been worrying a bit about having it. Thanks for the advice! Glad it worked for you

[dasprior]

Please make sure you get a surgeon who does excision and knows what they are doing. Join Nancy’s Nook on Facebook- incredible site full of relevant, upto date information and treatment methods.

Arm yourself with knowledge and don’t settle for anything but the gold standard in treatment. Here’s to getting a quality of life back.

[Rubyangel1 in reply to dasprior]

Okay I will look into Nancy’s nook thank you, and I’ve read so many books and articles about my condition to just fill myself with as much knowledge as possible

[SarahK73]

Had endometriosis and adenomyosis since aged18 I’m now 46

I have had15 laparoscopic surgeries, open bowel surgery and a hysterectomy!

Get checked out sounds like a endometriosis flare but could be a cervical or ovarian issue or even an infection xx

[Rubyangel1 in reply to SarahK73]

Omg!! That’s so bad, I’m so sorry you had to go through all of that! Yeah I got it checked and it could maybe a cyst- but I’m hoping it’s not so fingers crossed xx

[StefaniaJW]

It sounds like the first laparoscopy was not performed by a very experienced excision specialist. I would immediately look for a great Nancy Nook surgeon in your area and get excision surgery with him/her