Anyone willing to talk

[CA938]

Hello,

I've been in a relationship with my girlfriend now for 8 months we have always worked around her endo throughout. Shes been diagnosed with endo since 13 and also had already had keyhole surgery to remove a large amount of endo tissue from her womb which was about 2 years ago. Since I got with her, the pains have started to get worse, much more worse than even before her surgery to have it removed. This means its grown back really quickly. Just recently it's been so bad that we have had to stop sex all together. Sex never hurt her during, it was always after sex the pain rolled in. It's gotten to the point where she has just said that she doesn't want to have sex anymore which I understand but it's starting to affect her mentally more and more now which is concerning me. She is on the waiting list and has been for her gyne for over 3 months now to have another surgery and also get the coil put in but the list is long and each passing day she gives up more and more. I remind her daily that I'm never giving up on her and that it will be gone but she just can't fight the pain anymore.... today we tried sex again for the first time in a month and afterwards she was brought to tears, crippling in pain. I dont know what to do because I care so much about her but can't do anything but be there. I want to try and get on her gynecologists case and push her surgery forward because seeing her like this makes me feel useless as a person and partner because I can't do anything more than what I am already. I dont have anyone to talk to about it because people who dont know what it is or had been affected by someone around them having it just dont know what it does to you and the ones around you that you love. I just want my girl to be as happy as I make her during the day, every second of each year. She amazes me by how strong she is day in and day out. She inspires me to make a difference and not complain because I know how much pain she is yet she manages to get on with her life.

Sorry for the rant I just needed somewhere to vent my feelings and my situation.

To everyone with endo you are all the strongest people around.

Cheers,

Charlie Alexander

[princessk09]

Hey, she’s a lucky girl to have someone whose willingly to help and ask other people.

I used to have really bad pains during and after sex until surgery last July however it’s all slowly starting to come back.

The best thing to do is contact PALS if you’re in the UK. If your gf contacts them and tells them how bad things are getting, mental health issues etc, PALS will normally reply and help quite quickly or put you on the cancellation list.

Unfortunately, waiting times are long for us, I had to wait between 3-5 months for appointments and 9 months for my first surgery. By now my gynaecologist wants nothing to do with me and doesn’t bother with appointments or seeing how I am.

Just keep being there for her, care for her and stuff like that as it does help and makes us feel loved. If you ever need anyone to talk to, I’m always here. xx

[SarahMia227]

It's nice to hear how supportive you're being of your girlfriend, especially so early in your relationship. You're right to give her space when she says she doesn't want sex - at various points in our relationship, my boyfriend has gone months without any sort of sexual touch, because I've been in too much pain and too unhappy. He, like you, is incredibly supportive, and makes sure to let me know that he still wants to, that he still finds me attractive, but that it's totally up to me how often and how we have sex. I've found that helpful. There's a lot of trust involved - I need to trust him not to push or hurt me, but equally he needs to trust me when I say that I want to have sex, even though I know it will hurt.

I've been with my partner for 5 years, and about 6 months into our relationship, I started getting pain during sex (I was diagnosed with endo about two years later.) I get pain during sex, but also after - if you've not tried it yet, I find a warm bath or a hot water bottle between the legs helpful when it's painful post sex, plus painkillers.

It's been a long, long road with lots of treatments along the way. In my case, the surgery I had didn't decrease my pain at all, but everyone is different. I'm coming to accept now that perhaps in my case it's not treatable, which for a 24 year old is pretty devastating. I understand how your girlfriend feels - sometimes I just want to scream with how angry and sad it all makes me feel.

Has your girlfriend joined this forum? Or gone to one of the support groups? Or called the helpline? I've found both very helpful, it helps to feel like you're not alone.

That turned into a bit of an essay! Good luck - you're not alone, and this forum is always here for you and your girlfriend.

[Bubblepoppy]

Hay you are amazing for been there for your girlfriend she is lucky, I myself have a very supportive amazing boyfriend of 19 years and does everything for me topping up hot water bottle, getting my tens machine out, doing the housework, etc, also I don't have endo I have adenomyosis same symptoms, I know its no help saying this but just keep doing what your doing, this forum really helps me and everyone on here maybe get her joined up on here we all have a rant on here and it helps with our mental health and just knowing that we can speak to someone going through the same kind of things she's going through I hope she's having a good day today.

[Nicjane]

Everyone has given the gyne advice i just wanted to say that you're mentally is the exact same and my boyfriend we been together for 5 years and endo has made us stronger! We put probably more effort than other couple to be imtimate in other ways and learnt to be very open with eachother! Youre gf is very lucky to have you ! I wish you both the best. You can get through this hurdle. Just make sure she always feel loved (which im sure you already do!)

She can join this forum if she hasnt already and endometriosis uk is amazing site with lots of advice and tips even a call line i believe😊

[Phoebedzidzor]

You are amazing! keep encouraging her and uplifting her spirit! I also suffer with endo, here to say I'm standing with you! you guys aren't alone! xx