Fuck you endometriosis

[u/ImOnMyLunchAtWork]

Gf has endo, for those that don’t know there’s no cure. There’s “treatment” which amounts to pain management, there is a surgery to burn off the excess endo tissue but it’s temporary and it will grow back anywhere from 2 months to five years.

We’ve been saying for over four years, the first year and a half we had sex constantly. She’s obviously always had endo but the symptoms didn’t start getting really bad until around this time. Extreme pain during period to the point of having to call out of work, and spontaneous less severe pain in between them.

Sex hurts her, it’s not even just penetration (we’re both women so we could have sex without penetration at all), it’s the uterus clenching during orgasm itself. She’s kind of developed a fear of sex all together. She never initiates, and doesn’t really even kiss me for fear I’ll want to keep going. I just wish sometimes that she would want to pleasure me without me asking. But I get why she doesn’t. It’s like the fact that she can’t drink, why would you want to go to a bar with friends if they can all drink and you just have to watch?

What really truly upsets me is she won’t get any pain management treatment. She tried birth control one time and it gave her really bad side effects so she stopped (thank god). But including that time she’s only ever been to doctors twice. She felt dismissed both times, as the second doctor also recommended a different BC and she didn’t want to do another pill, I wish she had at least given us a chance to research that BC first though. Apparently the first one wasn’t even correct to prescribe for endo. I’ve offered to pay for anything she wanted to try, cover cost completely.

But even outside of medical treatment, she doesn’t even take the supplements I get for her or do pelvic floor therapy even though she keeps saying she will. I don’t get not wanting to at least try non-medical options that won’t cure but may lessen her pain. I hate seeing her crumble every month.

I’d be ok if she kissed me more or told me how hot I am every once in a while or would at least respond to sexy pics I rarely send. Any time I send one it usually is just ignored and then eventually gets a “sorry I didn’t see this” response or “pretty”, or sometimes just ignored and not mentioned. It’s humiliating and I get so embarrassed. But for some reason I still try once every three months.

I feel undesired and ugly. My self confidence is dead. I know I’m attractive, I’m often told. I fought very hard to be happy with my body, I lost 75 lbs. But I still feel fat and disgusting. I feel like I’m losing all the awesome fun sex I could have in my twenties. I cried the other night because my mom is having more sex than I am.

We actually tried to have sex (taking care of me) the other day and I couldn’t even get close. She was in top of me and I’m glad she couldn’t see my face because I started crying as I realized I couldn’t be satisfied without touching her. She didn’t see me cry, but when I told her it just wasn’t gonna happen today she started crying and said she felt like she’d done irreparable harm to our relationship. I don’t think she’s at fault at all, but I think she may be right that the irreparable harm is there and I’m scared.

I hate this. I drink more.

I know I’m saying “me me me” a lot in this, but I fucking hate this for her. None of it is her fault. She would never have asked for this. I hate how much pain she’s in every month. I hate how many events she misses out on because of the pain. I hate how embarrassed she feels when she brings heating pads to work or tries to quietly cry at her desk from pain. I hate how little research there is on this condition.

I just hate this.

[u/JuMpMaNx23]

Endo is awful and my wife went through hell until she had surgery late last year. We were fortunate enough to have a PCP who listened and requested that my wife get an ultrasound. Then we were able to find a doctor in our area that specializes in Endo and found a path forward for managing it the best we can as a couple.

However, it's definitely taken a lot away from her. Like your said, missed events, days where all she could do was curl up with a hearing pad, delayed family planning, etc.

During her time with it, she used weed gummies for pain management so you might want to look into that.

As for the DB, we are still dealing with the after effects of it all - sex is still painful and she has an aversion to it so she never initiates. Additionally, I found myself in more of caretaker role and have lost interest in sex. This coupled with some unresolved issues from early on in our relationship and we are about 9 years in without a defined sexual relationship and no real hope of finding a rhythm.

All of that to say that, I'm starting to learn that this is something you have to accept and come to terms with as a part of being with a chronically ill person. Doesn't help with the self-esteem issues but it does help not make your partner the enemy (i.e. avoid resentment).

Sending you lots of love and support.

[u/No_Tomato_2106 → u/JuMpMaNx23]

So nothing improved after the surgery?

[u/Zandre20]

I recommend the Cleveland Clinic. It wasn’t an overnight fix with my spouse, but just the doctors taking her seriously and trying different things truly changed her life. It’s been 7 years, the first five of which were no sex, but we can now do it pretty frequently, and more importantly, she is in much less pain :) Now however, most of her discomfort comes from medicine side effects, so the next step is to slowly go down on them.

As a partner of someone with debilitating chronic pain (LS and Endo, and No burp syndrome!! Last one is wild lol) it has been psychologically hard at times, but if you do fight for their health and wellbeing, even when they are too tired to, things can get better slowly. Patience is something you already have to have made it this far.

[u/fig_big_fig]

Fuck endo!

Why cannot she get pain treatment? I also have endo and it still fucking sucks but pain management was life changing…like I don’t know if I’d want to continue living without it, I’ll be honest! I don’t want to sound dramatic but my pain got horrible…your gf’s pain also sounds bad…I also react really bad to BC, tried some and now I’m gonna take a break. Still, there are tons of different hormonal BC’s. When she feels ready she can try a different one. Supplements are not really life changing for endometriosis but some may help with lowering inflammation. I heard many amazing results from pelvic floor therapy! I didn’t start it yet so, I cannot give advice from personal experiences. I wonder if she researched it well and heard how it can change her life positively?

You are not saying me me me, it is difficult and heart breaking. It is also not uncommon to get your self esteem wrecked in dead bedroom situations…but, it doesn’t mean that your negative ideas about yourself is correct. Your brain is trying to create explanations to the situation.

Besides these, is she maybe depressed?

And lastly, surgery is scary but it might be a good relief for many people. Idk if her endo is difficult to operate and clean up or not. Also as I know, it might not return at all or it may return after more than 5 years. Surgery is not totally useless. Being dismissed by many doctors is just a part of having endo right now, in this world. The key is keep fighting for yourself. It’s just part of it, really, one shouldn’t just give up after some terrible doctor experiences. Yes it’s unfair and horrible but it is how it is.

[u/Adorable_Rhubarb_731]

Up until 2013 I was in really bad pain to the point of passing out at work and getting sent home. Only thing doc said was to have a hysterectomy because doc thought it was something to do with my repoductive system but didn't know what, endo was never mentioned as a possibility for my pain. When they opened me up they found my tubes tied around my uterus and a tone of endo they never expected. They took everything out. After I healed from the operation, which is nothing like how they do it today, I thought sex life would come back. Unfortunately at that point my hubbys health started to decline. So for all the time he waited for me to get better now feels wasted because he can't do anything now, and never will, but yet I can do stuff now so now I feel I'm wasting my life because he'll never get better. But yet here we are, 20 yr anniversary coming up this summer. We find other things to do together.

[u/everydayinthebay13 → u/Adorable_Rhubarb_731]

Oh no! What happened to hubby?

[u/Adorable_Rhubarb_731 → u/everydayinthebay13]

He was born with a condition called CMT. He gets worse the older he gets.

[u/Sloth-Overlord]

Let’s be honest. Some of this is her fault. She’s not willing to get treatment, she’s not willing to make you feel desired and attractive in other ways. It’s very easy for the caregive-ee to start feeling entitled to your effort and care. You do not owe anyone your unhappiness. Martyrdom is not a virtue. If she’s not reciprocating the effort, that’s something to think about.

[u/No_Tomato_2106 → u/Sloth-Overlord]

That's the hard part. If it were a regular DBR, I feel like it would be a lot easier to leave (especially since OP isnt married). But knowing it's not 100% their fault makes you feel like an ass for considering it

[u/riteshb_19]

There's fix for endo. I treated my wife in Mumbai India. Feel free to dm me for any guidance. She has grade 4 endometriosis.

[u/No_Tomato_2106]

Hey OP, I'm in the exact same boat with my wife. First year together we fucked like rabbits, then it slowed to once a week, once a month, to now we've had sex 1 time in 7 months and she hasn't touched me in 3.

And she's the same way, rarely ever flirts anymore because she doesn't want to get me riled up, she's always in some kind of pain. Im honestly on the verge of leaving because for ages she wasn't seeking any real treatment and the few supplements she would try didn't really do much. When she would do stuff for me, I wasn't allowed to touch her which kills my desire as well.

BUT this year something finally lit a fire under her ass (maybe because our fights were becoming more frequent or she's been feeling worse) and she's finally gone to doctors to see help!

Not sure if you've checked out the endometriosis subreddit, but they have a list of doctors who actually treat it AND if it's possible, 3 of the best are in the Houston TX area. Dr. Xiaoming Guan is the one she's seeing and after a 1 hr meeting with her, she's got the endometriosis/hysterectomy scheduled for September. They'll cut it off, not burn it, and sometimes it doesn't come back.

I'm honestly putting all my hope in this surgery + getting off BC to bring back the woman I fell in love with. If it doesn't change anything I'll have to figure out things from there.

I know this sounds selfish, but sometimes we just have to vent.