endo and sex

[Bondi64]

As the song said ‘lets talk about sexy baby!

im keen to hear from all you endo warriors how you deal with endo and relationships

I'm stage 4 endo and at the moment opted for no surgery and just continuous pill.

To put it bluntly im struggling with even orgasms - what used to be something enjoyable has now turned into a band of electric pain across my abdomen and the pleasure element seems to be overtaken

its making me anxious about finding a partner because im assuming sex will be painful too

how does everyone navigate this? Did you find a way to cope with pain? Did surgery help?

Looking for tips and advice

[Keke123]

I can’t say I struggle with the big O but I have had painful sex since diagnosis about 15 years ago.

Id definitely go and see your doctor as they can give you dilators which will help.

I sadly still had pain and have had surgery to fix it which didn’t work and just created more scar tissue that’s painful.

From my personal experience because I’ve had it from when I started being sexually active, I’ve not been able to hold a relationship because of this but I know that there are many people that have really understanding partners and it can work. I’m hoping the older I get the more understanding guys will be.

I’m still at the age where guys think sex is the most important part of a relationship so it has been hard to navigate it. But the easiest way is to be upfront and honest so you don’t waste anyone’s time.

One thing that mildly worked for me was getting Botox injected in all the painful areas. Annoyingly only lasts for 6 months but it definitely helped.

Currently I’m waiting to find someone before I get my next lot of Botox so it becomes a bit of a hard one when you say you’d got to get on a wait list before we can try to have sex.

Hopefully you’ll be alright though! Definitely see a doctor and discuss it with them as there are so many routes of treatment to explore.

[Mal_w]

My tip is to get the surgery! I had advanced stage 4 and my life was crippled. Everything stopped. Sex is still painful and tender at times but it is a billion times better! DO NOT WAIT to get the laparoscopy...you could end up with worse things from letting the endo win...like cancer.

[jodiefoster1977]

hi

I currently take anti inflammatory and pain relief tablets to manage my endo pain. Sex can be painful in certain positions but I just ask my partner if we can change positions. He knows about my endometriosis and the impact it has on my enjoyment of sex as well as the potential fertility impact. He’s very sweet and always encourages me to take my pain relief and always asks if I’m ok during sex.

I understand that when you do find a partner, you might not want to go into the whole endo conversation initially. So I’d recommend telling them that some positions are uncomfy for you when it does get to sexy time. No half-decent man is going to make you have sex in a way that is uncomfortable or painful for you. If you don’t know which positions are painful, you’ll only find out one way. But at that point you just say I’m not enjoying this/ it’s hurts/it’s uncomfy and suggest another position.

I do agree with Mal_w and recommend that you get the surgery. Although there’s a change it might come back, it is supposed to help so much. I’m currently on the waiting list for surgery!!

In terms of orgasms, have you tried reaching orgasm in a different way than usual? Maybe try and achieve it through clitoral stimulation, or penetrative stimulation?

One thing I could recommend is a TENS machine. You can either buy them or rent them. The rentals are around £30 for 6 weeks. It’s usually for pregnant women to help when in labour but it helps a lot with endo pains. You could try masturbating with the machine on, it might counterbalance the feeling you get across your abdomen and you can enjoy your orgasm. I know it may seem an odd suggestion and I haven’t tried that myself but it could work? You don’t want to be in pain and be scared to have sex/pleasure yourself!

[Petalgirl]

Are you taking any pain relief? I found I struggled to reach the big O on amitriptyline but I switched to pregabalin and it was possible again 😅 I am due surgery in 2 weeks for stage 4. I found things were best and easiest while I was in zoladex and in a menopause, however I've had 3 different partners since then and I've honestly just been up front about it, far enough in advance that it's not just before sex to make it weird, but not too early on that it scares them off! I haven't had one night stands though, all some kind of relationship. And all of them have been kind and understanding and happy to change position when needed and provide clitoral stimulation. Things have definitely been better since the zoladex and the constant pain relief, but even so there are some times of the month that it just doesn't happen for me.

I hope you find something that helps! And don't be afraid to open up to guys, if they arent understanding about it then they aren't worth your time anyway.

[Keke123 in reply to Petalgirl]

I’ve been on zoladex for coming up 6 years now and my life has completely changed, but the painful sex hasn’t. You said you wait for the right moment to tell them? When do you say this is because I’ve always been dumped after I have told someone I can’t have sex with them. I’ve now completely stopped dating for the past year and a bit because it just is not worth the heart ache.

[Petalgirl in reply to Keke123]

Wish I'd been allowed to stay on zoladex! Sorry to hear it isn't helping with sex. I slip it in somewhere between first meeting, but before sex 😅 and usually over messages 😬and for me it is just that certain positions are painful, there will be blood, and I might not come. I'm so sorry to hear men have not been supportive. There are a thousand other ways to be intimate with someone without it being penetrative sex. I am off dating at the moment too, but mostly because men are stupid and if they aren't adding joy to my life then it's not worth it. I'm busy and happy enough by myself thanks.

[Keke123 in reply to Petalgirl]

why were you not?

It changed my life so much that my doctor couldnt see the benefit of taking me off it. I have regular bone scans but it’s just the same as having a hysterectomy and he doesn’t want me to have that until I’m older. The only problem is I’m tied to my drs every 4 weeks. Can get annoying when it comes to planning holidays.

I’m 100% page you are with that. I said in my reply to the OP that there are definitely men out there that are nice. I sadly just haven’t met any good eggs yet 😂

[Knina]

Hi, that has been a problem for me as well. I would try surgery and physical therapy is a must- it looks like you will need desensitized nerves in your pelvis area. Try CBD oil and/or baclofan suppository prior to sex. Also I found rings that help a lot. My husband is understanding and says there is not difference with them. They psychologically remind me that I have an issue, bit I just need to get use to it. It has been 20 years since my diagnosis, I am still getting used to it 😂. Here is the link : ohnut.co/

Hope it helps. I am still battling sex pain, but resent discoveries help me.

[Claire_Alexandra]

totally understand! Seeing a pelvic physiotherapist privately has been a total game changer. We do internal physio, she does this in session and I am just learning how to do this at home with a pelvic tool. Then she also does physio massage, acupuncture and dry needling with me in session too. It’s totally stopped my orgasms from any method and it itself leading to horrific pain. I still get some but much less vulva and entry pain and deep pain with PinV sex but this is infinitely better. I’m waiting on trying an Ohnut too and have heard great things for those more sensitive days. It’s still a long way off feeling like it doesn’t impact my sex life physically or mentally but it has improved significantly. Also painkillers before never don’t help but depends on the vibe! Hope that’s helpful x

[Bondi64 in reply to Claire_Alexandra]

thanks for the advice, searching for a local physio and will try that!