Painful sex

[endodragon]

I am 19 years old and at university and have never experienced sex that hasn't been incredibly painful for me to the point where I have given up trying. Due to me being at University I feel as though I am missing out on this experience as a lot of my friends around me talk about their positive experiences and I feel as though I am broken for never experiencing that. Does anyone have any tips on how to cope with this or things that I could try to make it more enjoyable?

[asread]

It could be a symptom of something. I suggest going to the GP and also be asked to be referred to gynaecology.

You might find the website of “yes” products useful and they also have advice.

[endodragon in reply to asread]

I have been referred to gynaecology and they think the endometriosis is the cause of the pain during sex, but I was just curious on any advice whilst awaiting surgery as I am unsure how long it will be until i get it

[Tangoandmax in reply to endodragon]

Standard waiting times are awful atm. I have severe pain during sex so much so that I cannot withstand it. I also couldn’t get through a smear test because of the speculum. A recent MRI has shown my uterus is fixed in place as it’s attached to my bowel due deep infiltrating endo. I was fobbed off for years, just make sure they have an endo specialist/or at the very least someone with a special interest review any scans they do. Standard gyne/sonographers don’t know what they’re looking at/for.

[endodragon in reply to Tangoandmax]

My gynaecologist looked at my scans and found nothing, do you think its worth asking for a second opinion from an endometriosis specialist?

[Tangoandmax in reply to endodragon]

I had a number of ultrasounds done through my gp the people carrying those out didn’t have a clue. I also had two done through the gynaecologist at my local hospital, they had a standard sonographer carry out and review findings which both said everything was normal. I also have Adenomyosis which was missed by those people. Which meant my diagnosis was delayed it’s taken eight years leaving me in a bit of a state.

If you’re already with a gyne at the hospital definitely ask that ultrasounds are carried out by someone with the special interest. But failing that the MRI would be the better option. I trusted them when they told me over and over that everything was fine, it was the biggest mistake. You really have to fight your corner, at one point they were telling me I was making it painful because I would tense thinking it’s going to be painful and it was in my head - you know your body, stand your ground with them. Absolutely ask for the MRI and make sure results and reviewed by the correct person.

There’s honestly nothing worse than feeling unheard by those who are supposed to be helping you. I’m sorry you’re going through it. X

[endodragon in reply to Tangoandmax]

Would you reccomend I ring up my gynaecologist and ask for an endo specialist to perform an MRI then?

[Tangoandmax in reply to endodragon]

Yes, they should continue to investigate. They have a habit of going well.. we looked and everything appears fine so off you go.

Speak to the gyne, ask who reviewed scans previously are they experienced in looking for endo. Request the MRI (anyone can put you in the machine and press go) ask them to make sure at the very minimum someone with a special interest in endometriosis reviews the MRI scan and reports back on findings. That’s where everything went wrong for me time and time again. X

[Tangoandmax in reply to Tangoandmax]

Sorry just to add the last person who actually found issue on my ultrasound said that all hospitals should have at least one gyne and one person in radiology who have a special interest in endo now. You need those people.

[Endofitall in reply to endodragon]

I had USS and MRI at normal gynae with nothing found. Laparoscopy at BSGE (endo specialist centre) found severe rectovaginal as well as pelvic Endo. Definitely have your lap done by a BSGE specialist. I had mine done privately in the end due to waits. It’s costing me £615 per month for 10 months but I’m super lucky I have family to help with costs.

[wonderlander]

I don’t have advice on what to do before you get more answers unfortunately as it’s a difficult one, however I’m sorry you’re going through this - for what it’s worth, I think a lot more people can relate than you might think, I was a lot more embarrassed to talk about things like this when I was at uni so I’m sure there will be others in the same boat. Just reading your other replies, what scan have you had done? If it was an ultrasound I’d try to get an MRI, ultrasounds often don’t show endo, MRIs can also not but it tends to be better picked up through an MRI x

[DutchVanderling]

first of all you’re not broken. 😞 had the same issue - started being involved secxuly at 16 and get in 2 decades down th line and still have problems. I had my first problems from endo at 13 which were investigated, well even before then tbh as uti’s were frequent from 8 - the helpful docs at 18 told me to have a drink, use lube, try different positions and ‘relax’ 🙄

In my twenties had scans and as they found nothing so they gave me a set of dilators and sent me away. Late twenties early thirties more scans. Nothing.

Now I’m in my late thirties and my MRI found nothing BUT the lady doing by ultrasound suspected endo from mh symptoms, did a TSU and found fixed and immobile organs, an ovary and a nodule so now I’m four month waiting for a specialist for a lap. It’s only taken them 3-4 decade but yay. Thank the gods for my current GP and that US nurse.

fortunately you know what you suspect is the cause (I had no idea ‘back in my day the internet was slate and chalk’ etc lol) but there have been leaps and bounds in the recognition of endo and treatment of it. It’s still a fight but at least we know the mister we are fighting.

So - don’t give when it comes to sex, even with yourself (ooh err) you can trust yourself and know your limits, trial and error and there is info out there on what angles are most beneficial. Also don’t let any medical professional pass you off - you are entitled to second (and third etc) opinions, machines are only as good as the people operating them and very often miss details, especially if they are not explicitly looking for specific details. You know your body.

It can Feel helpless but believe me you are not alone and have a heap of tools at your disposal even if it may not seem it.

Don’t give up on anything - you are still so, so young, you know what you suspect and you are most definitely in no way at all broken.

[endodragon in reply to DutchVanderling]

Thank you I really appreciate this ❤️

[Sunset-lady]

This could be me writing this back in 1991. I feel for you lovely and I totally understand. It's endometriosis probably and it's painful. You feel broken and confused and it's so bloody unfair. I missed out on a lot. At one point I thought I was allergic to sperm! It hurt sooooo much. Im 51 now and I'd recommend the following: a good vibrator to learn which parts hurt and what doesn't. By taking time out to get to know your body and when it hurts and why, you can be more prepared for when you have sex. Some positions are better than others - learn what's best for you. Get a really good vaginal lubricant from the doctor for vaginally atrophy. There are lots available now; it sometimes feels like you're having your insides scraped out and this really helped that feeling. Showering before and after sex sounds obvious but it relaxes you and this helped me. Get the investigations done and keep pushing for help. I was dismissed again and again. It does get better as you age. I don't have any pain now during sex. Keep talking and be brave. I hope this helps xxx

[Endofitall]

I’m so sorry you’re dealing with this. I didn’t have my first proper relationship until my very late 20s because of this issue. It’s awful. I have rectovaginal endo (only diagnosed at lap in my 30s) and any penetration felt like knives cutting me.

A few things I found helpful:

-Using hypoallergenic lubricant like the Yes range

-Using a bullet type clitoral vibrator during sex, spooning position seemed to work well for us and I can use the vibrator which seems to help relax my pelvic floor muscles to penetration and maybe just pure distraction!

- Finding a pelvic floor physiotherapist who specialised in endo and chronic pelvic pain who did internal manual work as she worked on areas that were clearly tensed in reaction to the inflammation from the endo and gave me things to do at home to help too.

- If NHS wait is long where you are for pelvic floor physio (or they don’t do face to face manual work) and private not affordable for you, then as a student I read the Sex Without Pain book by Heather Jeffcoat (got it on my Kindle as was embarrassed someone would find it) and purchased a set of Amielle dilators from Stress No More website and a bullet vibrator and worked on things myself.

also if they’re a poorly trained pelvic floor physio who just want to get you to do Kegels, run the other way. All my physio has had to be about relaxing the pelvic floor as areas have grown too strong/thick/tense from years of pain and inflammation.

These are some of the recommended external stretches pelvicpain.org.au/wp-conten... but really need pairing with internal work for best outcome.

Please don’t give up on good sex. From feeling I’d never be in a normal relationship and get to experience good sex, I’m happily married to the most wonderful and understanding soul and we have absolutely awesome sex! So it is possible. There are still some positions I just can’t handle but still we have a very satisfying sex life. And also don’t underestimate outercourse - we spend a lot of time doing all this stuff, oral sex etc and proportionally a lot less time on penetrative sex. I had a bad flare leading up to my lap at a BSGE centre and around this time we’ve mainly focused on outercourse and I’m back doing pelvic floor physio in hope we can rekindle our penetrative sex life again soon. So don’t worry if things mean a forward step then a backward step.

Endo is tough but you are too.

Best of luck and DM me if you need to.

[JOSANDY40]

Well my first couple of times were uncomfortable a s stomach ache. So firstly you need to make sure you're turned on. Perhaps take a anti inflammatory painkiller. Use plenty of lube all the way up inside. Get your partner to take it slow and shallow til it opens up and no fast or deep thrusts. If the pain continues then after a few wks perhaps you need to get checked out. I remember having a some fast, deep sex. I felt like I'd been kicked by a horse in my groin.

You need to tell your partner what you want. Take the control and say what or how you want to love your enjoyment. Over time you will learn about yourself, then the fun begins.

Best wishes

x

[allym92]

Sorry love I know how hard this is!

For me physiotherapy did help a lot with painful sex. Not a total cure but part of the problem was that my pelvic floor was incredibly tight after being in pain for so long. If you look up a women's health pelvic floor physio, it might be worth trying. I only started going when I was 29 and I wish I had known it existed when I was 16 and suffering! It might not help but it could be worth a try xx

[allym92 in reply to allym92]

Oh also Yes organic lubricant is your friend! It's better than any of the processed stuff in my opinion, it never irritates anything down there. Just every little bit helps with these things!

& Oh Nut - I got these in sex siopa in Ireland but I think you can get them other places online. This is assuming you are talking about penetrative sex! The guy pops on this ring and it controls the level of penetration. Honestly makes a big difference for me! xx