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I’ve been really putting off posting about this – I find it such a difficult topic to discuss but I've looked everywhere and it just doesn't seem to be something anyone's talking about. Anyway, it’s gotten to the point now where I could really do with hearing how other people cope with the effect of chronic fatigue on their sex lives!
I’m 28 years old and have been with my boyfriend for nearly 11 years, I’ve had CFS for just over a year and a half and in that time it’s had a huge impact on my relationship, particularly the sexual side. I was just wondering to what extent other people have an issue with the sexual side of their relationships and how they deal with that.
First of all, I have found that my libido has decreased to almost nothing – I do really miss intimacy but, in all honesty, it’s not something I look forward to anymore because it makes me feel so unwell. I often find that I have to stop sex half-way through because I get dizzy, shaky or light-headed. My boyfriend has also said that he’s reluctant to initiate anything anymore because he doesn’t like the way we always have to stop or the way it can make me feel so unwell. So we’re at a point where we rarely have sex and it’s something I’m really struggling to come to terms with.
I’m also having a headache with contraception because I have been on microgynon 30 for almost 11 years but, on average, I forget 3 pills per pack… I would be more worried about pregnancy if sex was a regular thing but at this point I feel like I’m taking tables for no reason but I’m also aware that in the rare event that we do have sex I’m not as protected as I would like to be because I keep forgetting to take them. My GP recommended the implant, injection and the hormonal and copper coil but I’m scared of change at this point because I’m struggling with the impact of CFS on my health and don’t want to risk some of the quite unpleasant side effects there’s a chance of experiencing whilst also having to deal with CFS. I’ve been tempted to come off the pill altogether and just use barrier methods but my GP advised against this – so I’m really at a loss for what to do and really don’t know who to talk to about this – I feel really stupid but I’m finding all of this really overwhelming and upsetting!
Anyway, thanks for listening and I’d love to hear your experiences or any thoughts you have on this!
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I would say that its a problem for most of us, with me i get infections or bowl problems and end up in pain and generally not wanting to do it. And yes the urge seems to have pretty much disappeared too....haha
The problem with the pill etc is it messes up your body’s natural rhythm and cause more issues and with CFS you tend to have a lot of allergies and reactions to thing so you have to be careful about what you put in your body. I was lucky in as far as i had already completed my family by the time my CFS kicked in so my husband was able to get the snip and remove the problem from us.
There are other ways to be intimate without having full sex, i know when my symptoms are really bad we just go back to that. Its a tough one and i guess there is no right or wrong answer. Its down to each couple to decide what works best for them, try new things that dont include full intercourse, and just see how it goes. You find with sex the more you do it the more the urge comes back so just try other stuff
I'm lucky that my partner is supportive and we talk a lot about it. I think he struggles with the idea of sex not including penetration and/or orgasm but we're working on it! I do find I still get symptoms and have to stop with non-penetrative sex too but it's less common.
It's interesting you mention the allergy thing - I've been having really weird reactions to things I've never had before, I had a glass of alcohol the other day and went beetroot red and, not all the time, get swollen eyes and lips (at least I know lip fillers aren't a good look on me haha!) from my friends pets - but the reactions aren't consistent or anything, it's just bizarre.
Thank you for your thoughtful response, it was very helpful!
Just hang in there the first few years are really rough.. but after that we adjust.. find out what we can and cant do, and for the things we cant do.. we can find new things that we can. Im 22 years in.. but it still surprises even me from time to time. Take care x
Yeah I'm only a year and a half in at the moment and it's been a huge learning curve for me - I have been quite lucky to get into a really super stable routine so all of my symptoms are comparatively more stable at the moment which is quite nice.
Thanks, and you take care too xx
Don't forget people do recover from cfs/me too!
Yes, I try my best to remind myself of this regularly (and extra often on a bad day haha)! I have seen lots of stories where people have recovered and do find it comforting to hear their positive stories.
Have sent you a private message on this. Well done to you for brooching this sensitive subject.
Hope that's helps
I'd wanted to come off the pill for a while before getting cfs but now I just feel annoyed at taking a pill every day when sex is such a rare event!
I've only recently heard of the Nuvaring, have you ever tried that yourself?
Yes I've had a friend who has had an extremely bad experience with the coil, which put me off a lot (although hers was the hormonal coil). From what I've read people seem to either get on well with it or have a terrible time. If you don't mind me asking, what were the issues you had? My friend had constant pain and spotting or bleeding for the time she was on it - I think she asked to have it removed after 4 months or so.
Thanks for your response - it definitely helped!
Yeah I would if you are able too, it's good to put only good nurturing things in your body whilst you have CFS. I haven't personally tried the nuvaring as I'm giving my body a complete break after the coil. But a very good friend of mine who has an autoimmune disease has it and it works really well for her (she's very sensitive to various things too) as the hormones are very mild. It's worth talking to your doctor or a family planning clinic who have more knowledge on contraception.
Oh god where do I start! I'm quite petite so having the thing put in was a pretty traumatic experience. I suffered with horrific stomach cramps for about 2 weeks and then the periods became very heavy / painful and last for over a week leaving me very drained. Even when I didn't have a period I was in pain, I would get stomach cramps. after about 6 months I was checking to see if I could feel my strings (this is required after each period) and I noticed they had gone. I was scheduled for a
scan and the coil had moved into the wall of
my cervex! Then I had to go through the pain
of having it removed. It was just awful! My
periods are only just started regulating again
(a year later) although the doctor said this
wouldn't be directly related to the coil I know
my body and I'm sure iit was the root of a lot
of my hormone related issues / lack of periods
etc. This is just my experience, you may get
on better. It just terrified my seeing on the
screen that it had imbedded! That was enough
There's also a patch that you can stick on your
backside, I don't know much about it
personally but that could be another option...
Hope that helps.
Don't let my bad experience cloud your judgement, what works for one doesn't always work for another.
All the best
Are things better since you've been giving your body a break?
I think I'll be making an appointment with a local family planning clinic rather than just the GP - 10 minutes just isn't long enough to have an adequate chat about these things!
Thanks for your help!
I'm much better now from stopping, took a while for all the hormones to leave my body (was on the pill previously for 10 years or so) I think having CFS makes your hormones almost sluggish (if that makes sense) as well as having hormones pumped into your body, so I reckon it takes a little while for your body to start producing hormones naturally. I take vitamins to help and they seem to be giving me the boost I need.
I would definitely go to the family planning. Also do you have a docotor who's got some knowledge on CFS? If so once you have a contraception in mind run it past them as Kiel previous people have mentioned our bodies are rather sensitive to new meds or anything new entering our body!
If you need any recommendations for vitamins give me a shout. I would be so much more worse off it it was t for what I take, so i highly recommended them.
Thanks again :-)
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