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Endometriosis UK
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Has my endo killed my sex drive? Am I normal? Please help.

Hi guys, im new on here and wanted to ask a question. I am 21 and was diagnosed with endo about 3 years ago. I have been with my partner for 3 1/2 years and for the past 2 1/2 - 3 years my libido has slowly but surely completely died. My partner has tried to be understanding but its getting beyond a joke now and hes not sure how much more he can take. Its killing me becuase I want to be normal so much and im sick of feeling like theres something wrong with me. I want the sex life I had before because this is destroying my relationship. Is this normal? Is there anything at all that can be done? I feel like I need to give him answers like how long could this last, will it ever go aay and go back to normal. It would be interesting too know if any of you other ladies have experienced the same problems.

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Hi,

I am 23 and In the same boat :(. It's so blimming frustrating! I think mine is purely pain related- do you have problems with pain too?. After about 3 years of normality with my partner I started having problems with pain during sex so started having it less often... Every time we did attempt it I ended up in tears 1. Because of the pain and 2. I was so upset at not being normal and feeling like a failure! So 3 years later I've now gone from wanting to try to just really not giving a damn about sex at all- it's just not worth the upset. Luckily my partner has been so understanding- he said if we never had sex again then so be it. Not sure if he meant it but it certainly took the pressure off of me and made me feel so much better.

After years of going backwards and forwards to docs and gynaecologists I now realise its an effect of endo and tbh I'm glad there is a solid reason for the pain rather than there being something unknown going on. (Altho not glad that its endo of course).Now I'm looking at treatment I'm feeling more hopeful- I hope once the endo is under control then the pain will be too.How are you managing your endo?

I think one of my main issues at the beginning was letting my partner know I still loved him and that my reluctance to have sex was not his fault- I guess it must feel very rejecting at times and I can imagine how upset I would have been if things were the other way round. I'm so glad to say it hasn't had too much of a strain on our relationship but it was certainly difficult at the beginning. Our current fear is how on earth are we going to attempt to conceive if this carries on.

I would be very interested to hear of any treatment you have had and your experiences- I've driven myself mad in the past thinking I'm the only one! I'm sorry that you're going through this and hope you find a solution.

X

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Thank you so much for your reply, its so comforting to know that I am not alone. Im not sure my partner completely understands and I think alot of the time he feels its because I am not attracted to him and that obviously makes him very upset. I was due a 2nd lap this year to try treat the effected areas but I waited so long for the procedure that I ended up being taken in to hospital for an emergency cystectemy so my original procedure to try treat the endo had to be cancelled. I am due to go back for a follow up in June but I think I need to see someone sooner as this whole problem is really effecting me and my life on a day to day basis. Its also been tricky as well as I was undergoing treatment up north before I started uni and now I live down south where I attend university I had to keep my doctor up north, now I am thinking I need to change my doctor to down here as soon as possible so I can see someone. It can be very painful and some times it feels like there is something physically in the way which I worry about a lot, I have mentioned this to my old consultant but she didnt really sayanything. I think it probably has alot to do with association as well. I know my partner has been trying so hard but I know he misses the intimacy we shared in the first year of our relationship, so we do argue about it a lot which leaves me feeling embarrassed and like whats the point in even trying if we are going to just argue about it anyway. I know I need to do something as I dont know what I would do without him wether there is some physical explination or physiological I know I need to get some help.

You are so lucky that your relationship is going stong and I hope I can get mine to this stage, have you thought about starting a family sooner than you would rather because of the endo?

X

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Yes exactly- it must be very difficult for them too.Try as they might they can't understand how it feels so it must be hard. My goodness that sounds awful.

I had the same issue with being at uni- I didn't move as far as you but I still wasn't able to keep going back to my own doctor. I went to a drop in clinic so many times only to be constantly told that I must have an sti etc when I obv new that wasn't the case! My partner and I were able to move back home for the final year of uni due to less hours and I then started seeing a new consultant under my parents healthcare- it was only then that I started getting somewhere with my diagnosis. I think sex is such a tricky issue- I often felt like GP's weren't taking me seriously- and like u said its difficult to know whether its physical or psychological or a mixture of the two!

Do you have a gynae nurse you can speak to about your worries? I have the phone number of mine so I can phone her when I get in a panic without having to wait for an appointment with my consultant.

I think you should definitely push to see someone else- it seems odd that your consultant didn't even give you any options when u spoke to them.

I am lucky but Don't get me wrong it hasn't been plain sailing - especially with the lack of intimacy. At the beginning I was very closed and withdrawn- i was even scared of kissing because I thought it would lead to other things! But we've worked things out and now still have that intimacy just in a slightly different way :).

The family issue has only just come up- as although I've suffered from symptoms for a long time I have only just been diagnosed and hadn't ever considered I might have fertility problems. Now I've been told ive got 4 years which isn't too much of a big deal for us as we already knew we wanted to be fairly young parents. It is difficult though...I'm just finishing uni and want to secure a job and be stable before we start trying. We are also saving for a house so ideally would like that to be completed. However people keep telling me we don't live in an ideal world which is very true! I feel lucky that I do atleast have a chance unlike some poor ladies with endo. It is very tricky to figure out what you need to do now if u don't know what the future holds!

Perhaps once you have seen someone and on more on your way to understanding the reasons it might be easier for your partner to deal with? Don't give up, your partner obviously cares very much for you if they have been through it all with you :)

P.s the other post mentioned about the pills effects on libido- I don't know about you but I have been on various pills for the last 12 years or so- how annoying to think that that could be contributing to it all too!

X

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Yea, I need to see someone as soon as possible and hopfully I will be able to find some answers for both of us. I think at this point the pill is just a drop in the ocean unfortunately. I dont really have anyway of direcrly contacting my consultant so im going to have to call the department and see if they can put me through to someone that can help.

Thank you so much for your help! X

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Hi Ella

I wouldn't be surprised if it did make a big difference to your libido. Endo can make you feel very tired and lethargic and that's before you even deal with the pain. I don't know if your taking any medication for your Endo because I know the pill can also effect your sex drive. I'm a lot older than you so I'm not so worried about that too much and my partner is very understanding which is very lucky. What works with us is if I make just a little bit of effect even if I really don't feel like it it makes a big difference to my partner as he can see I'm really trying. I know 100's of women will scream at me for saying that but he needs attention too and he helps so much and will go to the ends of the earth for me so I need to meet him a fraction of the way at least. I really do feel for you because at your age it should all be exciting and fun and enjoying lots of time with each other rather than how your feeling now. I know it can sometimes be embarrassing but if you can go to your doctor and maybe change your medication or get some professional advice.

Good Luck

Xx

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Thank you, and I know exactly what you mean, my partner has been so amazing amd I know how understanding he is trying to be, I have tried so hard but I cant change how I feel no matter how much I wish I could. I know something needs to be done or my relationship probably wont survive which terrifies me. I am currently on the pill but I have been put on it by my consultant as a treatment for my endo. How have you dealt with your issues? Did you speak to your doctor? If so what did they suggest you do?

Xx

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Hiya

I'm not taking any medication for my Endo yet I'm one of the lucky ones who only gets pain around the time of my period at the moment so I can't blame mine on medication and I also had a lap to remove my Endo in August. We are trying for a 2nd baby at the moment so there is a certain amount of naked dancing : ) I have to do as we all know you don't get one without the other. I do experience pain during intercourse and that's difficult for both of us because the last thing our partners want to do is hurt us. I use a lubricant called Preseed ( its sperm friendly) that helps with some of the pain but I would use a regular one if I wasn't trying to conceive. I have heard some other women take pain killers a hour before they plan to do anything if that's something that effects you. Have you read the side effects on your pill? Although your consultant has put you on it maybe he can change that over to something else. You could always email your consultant and let him know that your pill could be effecting you in a negative way, especially if your not due to see him/her for a while.

Xx

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I know it could have something to do with the pill but I was on the pill since I was 16 and didnt have any serious issues until I was 18-19 when I was taken off it, I have only just been put back on it last month so I know that can not to be main reason why. I think I will look in to getting in contact with my consultant as soon as I can

Thanks again,

Xx

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Hey hun,

Sorry you're in this situation. Painful sex is horrible and couple that with a low libido and sex becomes something you don't want at all. I had terrible problems on certain pills with my libido. I had to come off all hormone treatments because they were affecting my joints (I also have hypermobility syndrome). I was amazed at how quickly my libido came back after stopping the pill. It made me want it so I would prepare by taking my strongest pain meds and have a hot bath before going to bed just in case anything happened. I have a heated under blanket on my bed and I find that helps afterwards as I can just lie on my tummy on the heat.

If I were you I'd go back to the GP and ask him if you could possibly try a different pill for the endo as this one has made you lose your libido.

I have managed to go from hurting all the time and having stabbing pains with sex to wanting it more often than my bf just from coming off the pill and making sure my pain is under control.

You said in a previous reply that it sometimes feels as if there's something in the way? If you mean like you're very tight or it feels like a bulge just inside thi could be due to constipation (sorry for the tmi). I get badly constipated where I don't go for up to a week or I go every 3 days or so. I get really bloated and it all feels too tight down there. I take a movicol drink every night now to keep me regulated and this seems to have sorted that problem too.

I may be completely wrong but I would say it was a combination of the pill you're on (which can be changed as there's loads of different ones) and the pain. I would definitely go back to the GP's though, I know it's embarrassing but it's not as bad talking to a female dr so maybe specifically ask for one?

You bf needs to let you not feel guilty about not wanting it. The more you feel guilty about not doing it the worse it will get. My bf will not have sex with me if he knows I'm hurting lots. He's scared he's gonna make it worse, surely your bf understands that sex+pain=bad? I don't know him so I shouldn't judge but if he doesn't know a lot about endo then maybe he should do some reasearch? It's quite common for people with endo to have painful sex. Maybe ask him if he'd like to have sex knowing he'd be in pain afterwards and during? You're not exactly going to enjoy it if it hurts, how can this be something he wants to do?

I really hope you find a way to enjoy sex again. We suffer all this pain anyway, intimacy with my partner is one thing that makes me feel better so to have that taken away too is just awful :(

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I know it has a lot to do with his confidence as well as he just feels that I dont want him, I think it could work if he came with me the next time I go see some one so he can hear first hand that it isnt not that I am not attracted to him and to find out what exactly it is thats making me feel like this. Also I know my pill wont exactly be helping but this has been going on for a lot longer than I have been back on the pill. As ive been saying with the other ladies, I think I need to speak to my consultant as soon as possible, I know I need to do something about it and hearing all you ladies experiences as well I know Im not alone.

Thanks x

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Sorry to butt in on someone's post but what you've said has really interested me. If you have stopped the pill what are your other options treatment wise? I am due to have prostap injections but have been told to keep taking my pill too. Is there any treatment that isn't hormonal? As I worry that even if I get the pain under control I might still have problems libido wise.

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you need to cut down the oestrogen that feeds endo, hence the pill, mirena, GnRH drugs, but reducing oestrogen also reduces the libido too. so the only option is to cut out all those drugs and stick with pain relief and let your endo have free reign. Or stick with treating the disease and reducing endo and put with reduced libido. Personally I've got mine back since the mirena failed and I haven't started anything else since and am back on periods and painkillers as I was before the diagnosis. Not that I intend making any use of such urges at my age, but quitting all treatments or even pausing between treatments does allow oestrogen levels to go up again and libido returns. Catch 22.

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Thank you impatient. I wish there were doctors who could explain everything clearly in the way that the lovely ladies here do. I guess being fairly young I should go with my head rather than my heart and try and treat the endo before it builds up. I'm lucky enough to know now that I have it so I guess the least I can do is try my hardest to control it!

Thank you

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Hi sweetheart, just wanted you to know you're not alone. Have you taken any hormone treatments, or are you on any now? If so, it's possible that this is exacerbating things.

I spent 2 years on zoladex without HRT which isn't normally given for so long - my libido vanished on it. I stopped it 4 years ago and it still hasn't come back. It's not like I can just do it even though I'm not in the mood - its much more than that. I literally cannot do anything sexual, even proper kissing - I have a strong physical and emotional aversion to any kind of sexual activity. I've become a lot more prudish, can't even watch vaguely sexual scenes in films without feeling extremely uncomfortable. The fact that I find sex painful and that I was abused previously don't help, and the doctors just put it down to that, but that didn't stop me wanting sex before I started zoladex.

In my case, I've had about three or four instances where it has returned for 2 or 3 days and has then gone again - this suggests to me that I have a hormonal problem, but my gynae took one blood test while my mirena was in and said everything is normal so I don't know what to do.

It could be that you have a physical problem, like a hormonal imbalance, or you're psychologically averse because of pain and other symptoms. Maybe you just feel so unwell that you don't want to be touched. The end result is the same, but the process to get help is different.

I suggest speaking to your GP and asking them to test your hormones and refer you for counselling to see if this can help. Just know that there are many of us in this situation - it has put huge strain on my marriage and is yet another barrier to having children for me, so it can be very serious.

Let me know if you need to talk x

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Same to me but got no partner and scared of meeting a man if I ever do and worried it will put them off if it hurt me... I have no kids either and I am 40 and enjoyed having sex before I was diagnosed 3 years as well...

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Hi Ella,

I had the exact same question 2 years ago. I was so afraid that my relationship will be affected and I was even paranoid that my bf will leave me.

And here is where I am gonna give maybe a bit of a different angle to everything that has been said, dare I say "controversial".

I started thinking about what Esther Parel said in one of her podcasts: that sex is not only penetration is also touch and exploration. There are so many ways to get and give pleasure!! ^_^. This should be transformed from a burden into a sexy, playful adventure to discover what else you both enjoy ;) !!

Today I am happy to say that even if I can't enjoy all the time painless sex I found new ways to show and feel desire. My boyfriend has provided a lot of support and understanding and has even come up with the suggestion to adopt if I want a child and I am unable to make one.

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