Sex, Contraception and Chronic fatigue

Brain and nerves
1

Hiya everyone,

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! 

2

Yep mines gone too.  I'm 40, male and completely lost my mojo.  I think mine is from taking sertraline to help with the symptoms. My partners fine with it.  I used to be a right horney thing but now I rarely raise a smile let alone anything else !

3

Good question smile

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.  smile  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 smile

4

Hi Toni,

Have sent you a private message on this. Well done to you for brooching this sensitive subject.

Best wishes

Beverley

5

Hi Tony, I am sorry you are going through this. One thing I would definitely say, from my own experience is, dont have the depo-provera injection method of contraception - it sent me into an early menopause and I since found out it is known as chemical castration- so definitely thats one to avoid. Find something which suits you, not your Doctor :-) 

6

I had the same issues with sensitivities to contraception whilst having CFS. I'm not using anything st the moment as my sex drive has also taken a nose dive! I was advised about the nuvaring which is something that is inserted in the vagina and you wear it for the same amount of time you take your pull and then take it out yourself and have a period as normal. I personally think this is genius because you can control the hormones going in your body and from what I've read up they seem to be tolerated quite well. I had the copper coil and had MASSIVE issues. Would not recommend at all. I would suggest if you can giving your body a breaks as CFS does have a tendency to impact the hormones anyway so you may be sensitive to contraception right now (I certainly am)

Hope that's helps smile

X

7

hiya! after trialing a few other birth controls to see if they would help alleviate the PMDD that developed with my CFS, i finally tried the mirena IUD. mirena didn't help alleviate symptoms either (turns out i had a tropical disease called schistosomiasis that i've been battling 4 years; a simple deworming medication resolved my CFS issues last month), but perhaps mirena IUD might be a good fit for you. a bit painful to have placed, but once it is in, you're set for 5 years.

8

Thanks for your response! It's good to know I'm not the only dealing with this issue!

 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! 

9

Thanks for this! I didn't know that I had that reputation - this was one of the things suggested to me by my Dr. but I wasn't keen on this from the get go - I'm a little wary of trying new hormonal methods of contraception in case I have a bad reaction. 

10

Thanks for this!

 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!

11

Hi there - wow, how did they eventually figure out that that was what was causing your cfs? Apart from he placement of the coil did you find you got along quite well with it? 

12

Ahh I have a friend who's had the same side effects from taking an SSRI! I think the reaction of your partner is really important. Mine is supportive and understanding but I definitely know they wish things would go back to the way they were! 

13

Hi smile

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

for me.

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 smile

14

Oh god, that sounds horrific! I'm sorry you had such a terrible experience - that seems to be the way of birth control, you either get on with it or you don't in a big way! I think whatever option I go with it's going to be a bit of a gamble!  

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! smile

Thanks! 

 

15

I was just unlucky unfortunately. Wasn't pleasant especially as I was currently being diagnosed with CFS!

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!

Good luck smile

16

Hi Alcohol intolerance is common in about 70% of people with CFS.  The thing to remember is that they are intolerances for the most part, which means just because your struggling with it now, does not mean you cant have it in the future smile I get periods where i cant even smell it.. then when im not so bad i can have the odd drink. But sadly we do seem to develop some full on allergies too  sad  its just trial and error. When your symptoms are at their worst seems to be the danger time.

Just hang in there smile 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

17

Ohhh so that is the reaction they mean when talking about alcohol intolerance? I'd always wondered about that because up until this point I'd not had any reaction to alcohol at all.

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

18

Yeah I read an article online that recommended vitamins etc for people coming off the pill to help stabilise hormones. My current Dr is aware of CFS but as of yet I'm unsure as to how knowledgeable he is - I will definitely run it by him though and see what he says.

Thanks! x smile

19

Hope it goes well.

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.

Haylee X

20

H Toni,

Don't forget people do recover from cfs/me too!

Best wishes

B