Diagnosed with Endo

[Lunaticmagnet87]

I’ve just currently been diagnosed with Endo this week, i have 3 cysts. I’m 30 and have no children but would like to think I would have them. I have been trying to read up on as much as I can about it and how to deal with it. I’m pretty much use to the aches & pains as they have just become part of my daily life. I personally don’t know anyone who has suffered with Endo to even start talking about it. Should I tell my parents? Specially my mom? Being a woman would it be helpful to get another woman’s perspective? But any general advice would be greatly received.

[luthien]

Hi, I was in the same boat a while back, so I get how you feel.

Don't worry too much about the children aspect for now, I'm always of the idea some things will happen and some just aren't meant to be, just focus on your health, where you want to go with treatment.

Are you in a relationship: I found it was so helpful to talk it all through with my husband; he comes to all my consultations. Talking to your partner about what you're going through can help as it's someone that's there all the time and they can help with the practicalities when you're under the weather or in pain, you can even discuss future plans better if they know all you're going through and your thoughts. I've found my husband is more supportive than any female friend who isn't going through it!

I talked to my mother, and it is an idea; endo can be in families; so she may have suffered with it. Although be prepared when discussing treatment; remember in their days treatment was a hysterectomy so they may not be as up to date with current procedures. My mother always said heavy periods and pain are just what we have in our family, when I had my diagnosis and I talked to her; she said "yes we have that, and the only option is a hysterectomy, but tell the doctors you want children then they won't do anything" Some mothers of course do keep up to date so they can be amazing to talk to.

All women's endo symtoms are different, they're unique, obviously we all share the same common ones, but each level of pain, intensity of syptoms, duration of symptoms and time in the cycle is different.

[Lunaticmagnet87]

With the children aspect I’m not worried, I’d be happy if it happened but if it didn’t happen then that’s the way is was meant to be.

I can talk to my partner, we are pretty open talking about it all. His very supportive. He is the only person who knows at the moment. But I feel like I’m annoying him about, which I know it not true but I feel like a burden with him being the only one I can talk to. Other than a doctor.

That’s why I feel like I should at least talk to my mom about my situation and get more opinions and support. Not that my partner don’t do a good enough job. Bless him.

[danielle996]

Hey! I’m 31 now, an ultrasound I had last year, after failing to conceive, showed up 1 cyst on each ovary and I was diagnosed in October with endo following a lap. I didn’t know anyone that had it either, I spoke to my husband (although he’s pretty useless with things he doesn’t understand), my mum and some of my friends (who also have had/have different uterus problems). For me, it definitely helps to have someone to chat to about it, even just to joke about it, makes me feel less crazy

[Lunaticmagnet87 in reply to danielle996]

Yeh I understand the feeling crazy. Feel like I’m overreacting and just being a pain to everyone. It’s like I want to talk about all this stuff and I feel so bad for my partner cos I don’t wanna chew his ear off about it day in day out. Gonna meet up with my mom soon and have a chat. I feel like I really need another woman’s voice in this situation, and I cudn’t think of anyone better 😊

[danielle996 in reply to Lunaticmagnet87]

Good luck with the chat, hopefully it will help you! It’s definitely difficult for people that haven’t been through it to know what to say but once you start talking about it, you might find that more people than you realise have similar situations. Feel free to message me any time if you need to rant or anything. 👍

[Lynne_support Partner Endometriosis UK]

Hello Lunaticmagnet87. Endometriosis UK has a number of ways of supporting women with endometriosis and their family and friends. You may want to consider attending a local support group if there is one in your area, this is a great way of meeting other women who will understand what you are going through. A list of all our groups is available on our website endometriosis-uk.org/find-l.... If there is no group local to you then you could try attending one of our online support group meetings, details of their meetings, held over Skype, are also on the website endometriosis-uk.org/online.... We are here to support women like yourself.

Lynne, Endometriosis UK

[Mimiandbabies2]

Hi there.

I’m a long term sufferer if endometriosis and unfortunately it damaged my fallopian so badly that I was unable to conceive naturally. I’m pretty sure this is the only way it effects infertility unless you have another illness but I could be wrong? If your not to bothered about having babies I’d focus on getting the best treatment to get yourself feeling better. For what it’s worth I have 2 gorgeous kids now (ivf and adopted)... good luck x