Recently Diagnosed - help!

[MS95]

If you don't want the whole story just skip to the 3rd chunk! Thank you in advance xx

I got 'clinically' diagnosed with Endometriosis on Monday after being horrifically unwell for two months in which the only time I went out the house was for Drs appointments. At first they thought it was ovarian cysts but after an ultrasound and the pain / random bleeding continuing I went back to the Drs. However they feel that doing surgery to confirm it / remove any of the growth would be a bit counter productive as I am only 20 . 21 in the next couple days - happy birthday to me... They have started hormone therapy am currently taking norethisterone as well as an increased dose and 2 month instead of 3 month bases depo shot. They seem pretty certain that this is what is wrong with me, but obviously its not 100 percent till or if this continues for a greater period of time.

I'm struggling to try and come to terms to what is going on with my body and the hormones are probably making me feel worse. The pain is something I can get over its the possibility of not being able to have children that is genuinely destroying me inside. My boyfriend (of 1 year) has been absolutely amazing. He also has a chronic condition - crohn's. However though him being older (29) neither of us are ready for children, and also the fact we have only been together for a year. I am at university in my final year, wanting to do a PGCE after to become a primary school teacher.

I'm just wondering if anyone has any tips in regards to helping with pain, the emotional side of endo and relationships/the prospects of not having children?

(I know some people will read this and see it as i don't even know if its 100 percent what is going on with my body. But symptom wise and the opinion of the one decent doctor I saw it seems rather certain. Genuinely, one of the Drs I saw claimed the pain in my stomach was due to 'needing to empty my bowels' though after not having a period for 5 months, and bleeding old blood and being in so much pain I was crying in the waiting room she thought it was because I needed to poo essentially...)

[millipede-24]

I too am very new to this and am now "allowed" to accept that I have endometriosis after being diagnosed through a laparoscopy and I too am coming to terms with all the things that entails.

In terms of pain, what I can gather is everyone is unique so I guess we are going to have to listen to our bodies and be proactive in changing anything that doesn't work.

In terms of children, I too have been battling with this. Before my fertility was threatened I loved the idea of adopting. I am a bit of an eco warrior so had the added guilty conscious of not burdening the planet with more life it cannot support. But once I found out my fertility could be compromised it broke my heart! Luckily there is lots of research to show that endometriosis does not necessarily mean you are infertile. But the other side of the coin is that their is research to show it is genetic and you are more likely to have endometriosis if you have a close relative with it and so then I have the added battle of what if I had a daughter? The chances of her getting it is pretty high. For me this has helped me accept that maybe my original ideas of adopting was the path for me but it may make it worse for you and if that is the case I apologize. But in a world of ever developing technology infertile really does not determine your inability to have a baby so have hope.

I would urge you to try and get a definite diagnosis instead of using drugs that may/ may not help. I am part of a study too which will help gain clarity on whether hormonal treatment is effective or not so it may be an idea to look into that too. The more you know, the more power you have to take control of your life and determine what your path will be.

Hope this helps!

[MS95 in reply to millipede-24]

Hi,

I like the idea of adopting too , but having your OWN child, a part of you is just so beautiful. In my ideal world I would love to have both my own and an adopted child, provide them with a better life. Thats true, but no one in my family history has it and the lack of research actually done on endometriosis is ridiculous in my opinion especially when you see the statistics (particularly in america I think its 1/10 women suffer from it). Yes hopefully.

I would have much preferred for them to get a definite diagnosis but at the same time for now at least the bleeding has stopped - finally ! And the pain is reduced, its the tiredness thats getting me and the combination of taking all these excess hormones isn't really helping! But if it gets worse i'm going to have to go back, I don't see the point (yet) anyway to pay for a specialist. But in away i should be grateful, it only took them 3 months to figure out what was wrong, which is minimal in comparison to most I have seen on here. Especially when u see all the horrible things happening in this world.

Everyone fights their own battles I guess. I'm sorry to hear about you too Especially when everyone on here knows how horrific it can get, and sadly seems to only get worse!

Thankyou, you have made me feel a bit better. Think I'm still in the sulking ' why me phase' (Hormones NOT helping ! )

But am back to the Drs Monday anyway for more hormones - yay... so will have a chat !

Cheers

Maxine

[Glondon1]

That last bit about the doctor insisting you have constipation is the same exact same thing they said to me. I told them I can't leave the hospital without further tests, I could just about stand from the pain. Same with the periods also, I maybe have 4-6 a year. they literally make you think your crazy hope your ok x

[MS95 in reply to Glondon1]

Thank you, you too. Its getting beyond a joke now. I have had random bleeding, pain every day, constipation for the past month or so ( I'm 21 I shouldn't be having this problem ) , blood in my stool and they literally just ignoring everything. I hope everything is ok with you, we will get there eventually ! xx