Endometriosis, intimacy and relationships.

[JasmineHole]

Hi im jaz, im 20 and I was diagnosed with endometriosis last year.

Before the diagnosis the symptoms just destroyed my world, I had a wonderful partner and a good job and a lovely house but because no one could understand why I was in pain they dismissed it.

My relationship with my partner disintegrated over 2 years because I could no longer be intimate. He tried his best to look after me and be supportive but after being told time and time again by countless doctors that I am just constipated he started to doubt me too. I lost all respect at work, being a chef, because I was unable to do the job. My moods are terrible and the pain is getting worse again even after my laproscopy and coil fitting. I am only young and im already scared that I wont find someone else who will understand this horrible condition, what if I just push them away like I have done before.

I usually make sure I stay strong but I cant be strong forever and the fact that the pain is worsening again is just making everything seem hopeless. I cant go through my life having regular operations and always having to take tramadol just to take the edge off.

Maybe the only thing to do is have a hysterectomy and be done with it.

And I know that there are so many women who have had this much worse than me and for much longer but I am already sick of it.. I always just want to curl up in bed and hope that the pain will stop!!

[tinker241]

Sorry to hear that u r not doing well but how bad is your Endo? And please think twice before u have hysterectomy... ok as u didn't want it as I do to be honest but it will come back x hope u r pain free x

[Lamorna123]

Just wanted to say that I'm exactly the same age as you and have very similar problems with my Endo with the constant pain and being on tramadol all the time. With the relationship problem, I was in exactly the same place and my ex boyfriend just couldn't understand and was not at all sympathetic. But I promise you, there is someone out there for you who will understand. My boyfriend now is so supportive and will do anything to help me, I'm positive you will find someone! Don't get too down, because then you've left Endo win! Love and hugs x

[Jillanovitch]

Oh you poor thing, I'm 46 and I've had this most of my life. I'm soooo upbeat you'd never know anything was wrong. This is harder than the endo acting happy at times lol. My heart oes out to you hong girls with this condition. Firstly he wasn't the man for you, there is a handsome charming man out there with you in his heart, secondly having a hysterectomy WON'T cure you. Don't let the endo win as the lovely young girl says above, life will get better just finding a pain relief will help you good luck xxxx

[Lilly83]

Hi Jaz

Don't give up, I have extensive stage 4 on my bladder, bowel, pelvis, ureters, pouch of Douglas, rectum, uterosacrals, 2 blocked tubes, everything stuck together in a mess and 5 endometriomas one measuring 15cm!!

I am on so many meds, including 8 Tramadol and Oromorph every day, I met a guy last year when my illness was at its worst, I knew from day 1 he wanted a family, and he knew I probably couldn't (I had my ovarian reserve tested and it came back at 3 when it should of been 40!) so as well as all my problems I have no eggs left, anyway he has supported me through all of this, my next op will involve bladder and ureter resection and bowel resection, so will have a bag after the op

I am also on Prostap (chemical menopause) now, I have been so horrible to him, crying and shouting with the hormones, anyway last week he proposed! I couldn't believe it, after all he has been through with me and a bleak future he still wanted me

So what I'm saying is there will be someone out there for you, and this endo won't get the better of you,

Do you have any more surgery lined up?

Lilly xx

[Abbs]

Hello jaz am so sorry you are going through this when endo was messing up with my life suicide was what I used to think off all the time cos I wanted children hysterectomy wasn't on my mind, after suffering so much in silence I took a step by joining this site which helped me a lot and made me feel that I am not alone. My pain made doctors run cancer tests on me that was how bad endo pain is jaz YOU ARE NOT ALONE and very soon you will meet a man that will accept you with all your faults keep your heads up and you have survived this long. Good luck

[cupcakegirl]

Just wanted to let you know that you're not alone.

My Endo started when I was about 13, and I was diagnosed at 22. I'm now 30, I've since got married and, although I had to stop working a couple of years ago and I'm on enough morphine to kill a horse, things aren't all that bad

Chronic illness puts pressure on relationships at the best of times, but when you factor in gynae problems and problems with intimacy, and bring undiagnosed and doubted, it can be very difficult indeed. Personally, I spent two straight years on zoladex up until 2009 - I completely lost my libido and it still hasnt come back, and I can't have any kind of physical relationship at all with my husband. It's been very hard for us but we're coming out of the other side and things are really good between us. Having Endo doesn't mean you're going to be alone. There are people out there who will love you regardless.

It sounds like you haven't tried much in the way of treatment yet so there are still many options left to you. You're right - you can't keep having surgery every couple of years as this causes at least as many problems as it fixes. Similarly I wonder whether the coil is helping or making things worse - I finally agreed to have one last year after many years of refusing. Initially it caused severe contractions every day for 6 months, depression, weight gain, and lots of other issues and now its stuck in there and I need a general anaesthetic to remove it. It's probably the worst treatment ive ever tried.

Have you ever been on the pill and did it help? I've been on every treatment and I find the pill to be generally effective without causing massive side effects like the others. If that's not enough, you could try zoladex or similar - this put you into a temporary menopause and you should only have it for 6 months. It was a wonder drug for me so my specialist kept me on it for two years - this has caused me a lot of problems but if I'd just stayed on it or 6 months things could have been very different.

You could also go to an Endo specialist for excision surgery where they cut te Endo away and is much more effective than laser or diathermy.

In terms of pain relief, are you just taking normal tramadol? There's lots they can add in to make the pain relief more effective - a slow release version that gives you steady pain relief, an anti-inflammatory, anti-spasmodic drugs, drugs that help with nerve pain etc. then there's TENS machines, heat pads, pain management courses, nerve blocking injections and tons more things.

A hyst is not your only option - its not even a good option as for many women it's not a cure and the Endo comes back. You have heap of things you can try before you get to even discussing that.

Personally I'm in a pretty screwed up situation - I'm 30, most of my pain is caused by untreatable nerve damage from years of chronic pain and surgeries, I have ME, I'm too sick to work and I'm on over 600mg of morphine a day plus other stuff. There's pretty much zero chance of me being able to stop the drugs or bring myself to have sex to be able to try for a baby even if my fertility is okay. Still, I have my husband and my cats and life isn't all that bad really. I go in phases of being very down about it all, and I remember how it felt to be in my early 20s and have no life and feel like theres no point carrying on but things do improve in one way or another.

When it comes to meeting new men, make sure you're upfront about your problems - if they can't handle it, it's best to know straight away. Having said that, my husband did not handle it well initially but now he's much better. There is light and the end of the tunnel.

Stay strong and get in touch if you need to talk.

x

[Laurenb19]

Hey. I am the same age as you as well 19 when diagnosed and now 20.

I live on pain killers too it's so hard trying to get through your day to day life. I'm sorry it didn't work out with your boyfriend but you will meet someone who will understand and support you every step of the way! I completely get where you are coming from with being possibly unable to have children. My partner understands but can't help but feel guilty ( less of a woman ) I'm still waiting to see my consultant after my lap ( which was 9th may ) o still don't understand what's going on and I'm scared "/

What stage is yours?

Hope your having a good day xx

[Danii]

Hi Lovely,

I am now 29 and was diagnosed at 19, i have had a few partners and all relationaships ended the same way, due t lack of intamacy, i also lost jobs because of it. However... I now have an amazing partner who is sympathetic (or as sympathetic as a man can be!) compassionate and really knows about endo after reading about it (his choice!) and i have a wonderfully understanding boss! It took me a very long time to come to terms with my endo and it being a part of who i am but when i did i found it easier to explain it to others and to lead a more positive life. Hang on in there and use the support around you, it'll take time but you'll get there.

xxx