little advice..

hey,
im new to this site. i have been diagnosis with crohns since the age of 16 which been four years.
i have been with my boyfriend around about four years and we are really going through a realy bad patch that i dont know what to get
over this..

first of since probably christmas time i been struggling alot with the tiredness for about a month or so where i was like forcing my self to get up and that in the morning and just wating to sleep alot.

this has however affected are sex life lots and he struggling to deal with the way i am at the moment. i just have no sex drive what so ever anymore and i really have no clues or ideas why. which is putting a big strain on are relationship!

i am not im remission but it has got lots better i hardly suffer with any symptom apart from the tiredness, i get the odd twitch now again but nothing major.

i just wondered if any of you could give me a little advice as i come to breaking point with this and i feel so guilty and bad how this is now starting to affect everything we have.

we argue, we hardly speak to each other about things anymore. and this isnt us as we been through so much with everything and been strong just got to much

any advice would help thank you :) x

Welcome to the forum! I totally agree with Stripey. No sex drive for a young woman is a symptom of something wrong. Are your menstrual cycles normal? See the forum for an interesting article on Crohn's disease and gynecology.

Kayley,
It is not rare for both males and females to both go through periods of low sex drive. Your disease does not help things either in that you are sick and you hormonal makeup can be all over the place. From a male's standpoint, this disease lowers my testostorone and makes me feel extremely tired too. This was fixed with testostorone injections. I would not be surprised to hear that your estrogen is low. Are you on any steroids right now? Many of our medications can cause this and steroids are usually the culprit.
The other thing that you may need to consider is that all of this has nothing to do with your Crohn's disease and more with your relationship. I know that what I just typed was the last thing that you want to consider but the things that you have typed are signs that it is a lot more than just lack of intimacy. Your body is an amazing indicator of how your relationships are going many times and may be trying to tell you something. Many times when we are trying to hold on to something that we don't want to admit is bad for us, our body has actual physical ways of telling us that we need to make some changes. A woman with a low sex drive is nothing to write about in the news because it happens everyday to a ton of women. A woman with a low sex drive with lack of communication, and fighting can mean that the relationship is having more issues that just sexual ones. The best thing that you can do is to have an open and honest converstation with your loved one about your future together. Ask him about his feelings and how he feels about you other than the sexual feelings. Ask yourself if you see yourself with this person 5 or 10 years down the line and if it is worth the anxiety of trying to please him at detriment to your health?
I realize that you may really love this man and that is why I think your should have a deep and productive discussion. Before that though, ask yourself if you are staying with him because you love him or if you are afraid of the prospect of being single? Would he make the same sacrifices for you if he was the one that is fighting a chronic disease? Whether you stay with him or decided to part ways, you will have put yourself in a better path of clarity. Remember that men are intelligent but we have such a hard time reading your minds and emotions. Most men are not emotionally driven at that age but if prompted can be great supporters of you and your emotions. We do not always know when you are upset or why you are upet with us and it helps if you CALMLY explain how you are feeling. He may be feeling that you lack of sex drive is due to his performance issues or his physical attributes. If you are extremely attracted to him and enjoy your intimacy, LET HIM KNOW. Once he fully understands and trusts that those are not the issues, he will be more apt to open up to you about how he is feeling and his desire to be patient and help you work through whatever you are going through. If you are 20 years old, you also have to remember that men's hormones are at a peak at that age and women do not hit their sexual peak until their late twenties and again when they are in their 40's. (learned in my Psch class).

Kayley I have had this darn disease for nearly 36 years, and this disease can really effect your sex drive. I am in remission, and my biggest complaint right now is fatigue. And because I am so tired all the time that affects my sex drive too.

Your boyfriend needs to understand that you have a chronic and incurable bowel disease. Personally I really think our partners/spouses need to understand that we are sick, and just can't perform like normal people.

I think you need to sit down with your boyfriend and explain its nothing against him, but that you are sick and doing the best you can just to get thru a day. Hugs!

Kayley, I'm glad to hear that you blood work is normal. I'm assuming that you were talking about this with your GI. Now go see your OB/Gyn, and explain that you have inflammatory bowel disease and irregular menstrual cycles.

The endocrine system is very complicated and I'm not sure that doctors understand it well enough to tell you what's going on, but I want you to push them to try. Here's a bit of my story: I was trying to conceive at age 32 and it wasn't working. My cycles were within normal range (27-35 days) but they were all over the map within that range. I started seeing a fertility specialist and it took another 2 years for him to get a baseline hormone level for me. At that point, my day 3 hormones showed that I had "ovarian dysfunction" and I had to resort to pretty extreme measures to get pregnant.

At the same time I was getting detailed physicals as part of a control group for longitudinal study of astronaut health. For a couple of years there they were measuring adrenal hormones (I don't know why). One value for me was unusually high for both years of this part of the study. This particular hormone, aldosterone, is linked to blood pressure. A high value is usually found when a person presents with high blood pressure. My blood pressure has always been, and continues to be, low. So no one could figure out why my aldosterone was high, and they just shrugged it off.

My reading around this topic indicated that the adrenal glands, pituitary gland and ovaries are in a triad of the endocrine system. My high aldosterone was probably linked to my high follicle stimulating hormone and my low performing ovaries. All of this was going on during a time when I did not know I had Crohn's. The medical literature from that time linked ovarian dysfunction to a likely autoimmune disorder. Again, none of my DRs ever thought of Crohn's - even the one who did a pelvic laparoscopy to find the endometriosis that was giving me such acute pelvic pain (he found none - my pelvis was clean of endo - but again, he never thought of Crohn's).

The point of my story is that you are tired and sleepy and have no sex drive. You are 20 years old. This isn't right. Even if your "blood work is normal" there is something going on and with some work I think you and your doctors can figure it out. EVEN IF YOUR BLOOD WORK IS NORMAL YOU CAN STILL HAVE INFLAMMATION IN YOUR BOWEL. Make that medical team work for you and take control of your illness - don't let it run your life.

I'm sorry your boyfriend is having trouble working through this with you. It is hard! Show him these messages if you feel comfortable and maybe he will see how other people with Crohn's feel.

thanks well this problem with my periods being really heavy and late never happened before i had my crohns disease i was always on the day i was ment to and they was never like they are now. so i have mention them to my consultant a few times and the specialist nurse said that a few people have always complained of it . but i am lets not forget in not in remission. although i do not suffer with any toliet problems or cramps or ne thiing at the moment . which is really weird.

although because of my crohns i dont just suffer with the normal symptoms it affects my eyes and they go really blood shot although that hasnt happened in like over six months now.. i have skin rashes because of my crohns.

i have regular heavy nose bleeds and always have swelled tonsils due to my mediciation. dont know if this also effect anyone else by my dr said it because of that..

so he said my blood are relevantly fine. he like happy with the way they are. so i duno what happening. it is pretty hard.