I'm new and nervous

[Jo22frank22]

Hi everyone I'm new here just recently been diagnosed with endometriosis, am struggling to cope with nobody seems to understand around me. It comforting to know that you guys understand. Look forward to hearing from you soon

[EndoHubby]

Hey there

Hope you are feeling better today

What are your symptoms and how was the diagnosis done

It is important to remember that this is a marathon and not a sprint . And don't loose hope it cannot control you . Happiness will come

[Jo22frank22 in reply to EndoHubby]

Hi there, thanks for your reply I'm been suffering for about 10 years with pain in the pelvis but f I finally after just recently they had found a cyst on my right ovary then a month later another ruptured they are finally taking notice now because of my suffering so now I'm under a gynecology so hopefully they can do something but it got to the point now I'm on morphine more often , I can't work, its affecting my life, my partner always in pain I've had enough. How do u cope?

[MooLoon]

Hi and welcome, I think I can say we know just how you feel, it's an uphill struggle but take each day as it comes, good and bad. Tell ppl you're not having a good day when you need to. I did loads of research about the condition and downloaded bits and pieces for my partner and family to read just so that they could understand what it is to have this condition. It has helped them and in turn, me. It has taken well ovee 20 yrs for my diagnosis and I've been through hell. You're not alone, you're not going crazy, although it probably feels like you are. Sending hugs, it's a hard journey but I promise you will get through it xx

[Jo22frank22 in reply to MooLoon]

thanks for your reply It a long time to get diagnosed but now I need to learn to live with it but I'm considering a hysterectomy at the age of 30 . I can't live with the pain anymore. How do u cope?

[MooLoon in reply to Jo22frank22]

Badly to be honest, I've had problems since I was 18 and I'm 45 now. It's a daily struggle with pain and constantly tired to the point I'm falling asleep at work. Because nobody can see it they automatically think and sometimes say get over it, which does impact, but they've never come across this before. They don't know the struggles ppl like us have to go through. I get really bad days when I can barely move because it feels like everything is going to fall out and pain is unbearable in my back, but I just stay still and try to breathe, which in itself is hard! I've been begging for a hystorectomy for the best part of my adult life but nobody would listen, until now. The latest gynae I saw on June has agreed and I go for my op in October. There is light at the end of the tunnel, I promise. X

[Jo22frank22 in reply to MooLoon]

I see my gynecology in October I'm going opt for a full hysterectomy too. I understand to how u feel , I had enough now too.

[MooLoon in reply to Jo22frank22]

It depends how long you've had it and what they've tried already. I had to go through a few years of various treatments and objections before they would agree as its not a solution. I've never had children nor wanted any so I've spent years fighting for it. It's like you're a tick sheet, they have to try all avenues before they agree, they had nothing left to offer me. One course I say do t try is the monthly injections, prostap. Although it alleviated the symptoms, when I stopped after 6 months which is the max time, mine has come back with a vengeance and it's the worst it's ever been. Be prepared, I wasn't, just thought they would agree straight off, they didn't. Be patient, and be willing to try all they want to try

[ClaireK1987]

Hey. Sorry to hear this. I remember feeling the same way when I was diagnosed, it's a big shock to the system. You learn how to cope though, with time and it gets easier- I promise.

I'd recommend you check out the Endometriosis UK site to see if there are any support groups local to you. Meeting other women going through it helps so much! You could also call their telephone helpline if you wanted advice or someone to talk to about it all.

Good luck with your journey. As someone whose been diagnosed 2 years now I'd say look after yourself and read as much as you can about the disease.

xx

[Jo22frank22 in reply to ClaireK1987]

thought support groups but there isn't any in my area , that's why I joined this website for help and support and to help others to like us. How r u today? I've got it mild at the moment!

[EndoHubby]

Hey jo22

My wife is the one who has been going through sudden pains she is 31 years old

All this started 5 months ago and one of the army of GYN we met thinks it might be Endo

her symptoms were very bad for the initial two months

1) constant feeling of heaviness in pelvic region

2) sudden shooting pain near the pelvic and rectal area

3) depression

Over the last 2 months we have joined yoga classes and come back to visit family and friends . that has helped her

I personally feel very helpless , can't see her sad and in pain but I try to cheer her up and the lovely people here are very helpful as well

In my readings I have found basically this summary

1) Endo is treatable not curable

2) treatment is excision surgery which is very highly dependent on the skill of the surgeon - have seen cases with recurrence in 6 months and also many with 8 years symptom free

3) post surgery reoccurrence is around 30% and second or even third laproscopy might be required

4) some global surgerons who are famous are 1) dr Tehran 2) dr redwine

5) diet and yoga help a lot

6) hystercomy should be last option and should most definitely be along with excision

[Jo22frank22 in reply to EndoHubby]

tell her she is not alone and I seriously considering a hysterectomy. It's that bad I'm on morphine. My partner too feels helpless, he doesn't understand or want to know. He just wants me back to normal. What's normal with this?

[Jo22frank22]

No I have the mirena coil and have no periods plus they found cysts on my ovaries and one had ruptured and the other had to be drained through laparoscopy and I have had enough of 10 years of pain and suffering in pelvis. I hoped a full hysterectomy would fix my problem. Plus I already have two children before all my problems started. Thanks for replying much appreciated but I can't live with the pain anymore its got to the point I'm on morphine most days and my partner is getting fed up of me not been normal. Help!

[Hidden in reply to Jo22frank22]

Endo Hubby gives some good advice. You need to see an endo specialist. I finally got there having seen two other general gynaecologists who thought hysterectomy was the answer. Unless you have adenomyosis, it is not. The endo will still be there. It needs to be properly excised by an endo specialist (there aren't that many). Keep doing your research. I am so glad I did or I'd be going down the hysterectomy route now.

[Jo22frank22 in reply to Hidden]

Yes i'm doing research too and its also helping talking to people going through same thing. Thanks