Painful sex... IBS? Endo?? Any thoughts appreciated!

Hello ladies,

I'm looking for some help and insight about my story..I've found alot of the pages on here interesting, particularly the ones about painful sex as I have had this problem for 3-4 years and am no further forward in figuring out what caused it or how to get over it. (I have been seen by psychosexual therapists and currently using vaginal dilators to try and become in control of the involuntary spasms i get during intercourse...but I'm still finding the insertions uncomfortable). Sex is most painful on penetration and then sometimes the pain lasts and other times it fades throughout intercourse. Pain on penetration is very variable - from burning...to sharp pains...to just discomfort. I dont experience pain during orgasm as others on here have mentioned. It varies whether or not its painful afterwards, ususally it is. I usually manage with it being sore, but it has to be done in a very particular position for minimal pain on entry. And sometimes I dont manage to at all. I've seen two different psychosexual therapists who both tried to link the cause to a relationship problem which I found unhelpful and hurtful as my partner is very supportive and we had pain free sex for a good year before my symptoms started.

One thing I have queried to my GP and the therapists is whether the symptoms are linked to my IBS symptoms. I have had IBS symptoms since the painful sex started and I think maybe a year or two prior to that...but with less severe symtoms. I have read that painful sex is a symptom of IBS but noone has ever been too sure whether the symptoms are linked for me. I have abdominal pain every day...usually a dull nagging discomfort thats normally always there and I get spasm pains that range in how painful they are, occasionally throughout the day. I have a massive bloated stomache maybe 70% of the day. My bowel habits I feel are just not normal (v small bowel movements really often.) I find it hard to pass gas, as if its all blocked up. I drink plenty of water to help with this but that only ensures stools arent hard when passed.

I feel knackered all the time. When I was in high school I saw my guideance councellor about this (put down to stressful teenage exam time). I failed subjects in uni and I remember falling asleep in lectures at that time. Now Im workin the 9-5 and find it so hard to be alert and concentrate cos I feel so tired. But I've put that down to the fact its a new job and a move away from home....or could this be the fatigue associated with endo?

My periods are fine and not anymore painful than I think is normal, however I have been on the combined pill for the last 6-7 years. After reading about endometriosis I'm concerned this could be masking some symptoms of endo.. (I do remember having painful periods before I was on the pill but it was so long ago I cant really remember...and thinking it was maybe normal cramp pains..)

The thought of a laparoscopy is really scary for me...when maybe I don't have a lot to go on. I'm getting an abdominal scan soon but I know this won't always show up whether you have endometriosis.

I just wondered if my story has similarities to others out there who have ended up being diagnosed with endometriosis. Maybe I just have IBS and painful sex (vaginismus I think - with involuntary spasms of the vaginal muscles). And maybe they're associated or maybe they're not. I would be very greatful to hear from others with your experience...and any thoughts on whether I should think about getting tested for endometriosis. Thankyou.

7 Replies

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  • Hello i took have had problems with penetration and was given dilators which i think are difficult to use. Ur symptoms do sound alot like edno and the fact u had painful periods before it could still be endo that is the cause! The pill can control endo for a while but you would be much better getting checked over. I just had a laparoscopy done in november and it wasnt so bad i they found i had severe endo, my ovaries were fused to my bowel and ovaries covered in cysts. Im still hyaving problem periods even after my op and now been put on a temp menopause to try shrink the rest they couldnt get. I have been told that endometriosis is also an auto immune issue as with IBS so its defo worth getting urself a lap done then you will know for sure. I had pain inserting tampons sometimes as the endo was right down into my cervix. Hope this helsp you a little bit xx

  • Hi

    You mentioned abdominal pain everyday etc. Have you taken any notes if your pain is changing according to your period cycle? For example if it is more around ovulation days, or before your period starts..You are right though, using the pill could mask some of the pain.

    Unfortunately, when it comes to this kind of pain, all women have very complicated system in the abdominal area, meaning that there are so many organs etc in the area, so it could be endo, but it could be easily something else too.

    I would suggest that you keep a diary with your symptoms every day and then go to your doctor with it. If you feel that your GP wont listen to you anymore, it could be a good idea to change doctor and make a fresh start.

    Endo in the bowel could easily affect the toilet habits, but you need to get a proper diagnosis. To exclude endo though, the only way is through laparoscopy. Scans dont show endo, I had ultrasound, MRI and CT scans and all came back normal, it was through the lap that endo was found.

    i hope you get to the bottom of this and I do wish it is something that can be easily resolved. One was or another you need to find out what is the reason causing you so much trouble.

    Good luck

    Jo xx

  • I too suffer during sex, although its not everytime. Tampons were a problem at times! I also had major pain during bowel movements while having a period, that was the reason i first went to the Dr. After 2 years of trying to sort this out, me thinking i was going to die, it took me sitting in the Dr's room balling my eyes out because things had got so bad that i had passed out during a toilet moment. That did the trick, i got my lap. found out i have sever endo which couldn't be removed at the time because it was too dangerous to my bowel bladder and kidney. Just coming up to my last zoladex treatment, which they're hoping will have shrank it all enough to remove. Sex is still painful but not as bad as it was. Not sure if that is the zoladex working or if it might be the mirina coil which was fitted during my lap!

    xx

  • Hello, I used to have very painful sex every time.. but mine was deep pain like he hit something too hard and i could feel it in my pelvis - really hurt. since going Gluten free my pain has stopped during sex almost completely. it was really my main symptom that made me think i had endo to begin with and started a little while after coming off the pill.. i also have issues with bowel are too but has been much better since cutting certain things out. it was finally confirmed that i have endo last year in May by Laparoscopy.. x

  • Thank you to all of you for your posts. I really appreciate it.

    I broke down the night I read all the commments...getting feedback just made it all real and I just felt very emotional! Which is why its taken me so long to reply. I'm going to not let things slide this time though with regards to sorting out whats wrong. I have an appointment to see a new sex therapist soon and I want to request seeing a gynocolgist too for a second opinion. I'm having regular gp appointments to try different treatment options for IBS and want to discuss with her the possibilities of having endo. Others I talk to either think its worth getting checked just to put my mind at ease but many also think I'm missing the major symtoms like heavy periods etc so its unlikely. So I've considered coming off the pill to see what they'd be like. It would just create other worries and problems if I did though! And the more I'm looking into it all.. the more my symtoms really fit the bill for having both vaginismus and IBS. I've discovered that I had symptoms associated with vaginismus (ie not being able to insert tampons) before I'd even had sex so I'm starting to think the cause of my pain isnt from endo. I find it crazy that pretty much every website that lists symptoms of IBS lists painful sex....and yet none of the therapists I saw seemed to go with that...and to be honest made me feel awkward/stupid for thinking it. I feel very exhausted and frustrated with the whole thing...but I do have some faith that because I have a better understanding now I can be more confident about my thoughts on the causes of my problems when I have my first meeting with the new sex therapist. I'm rather impatient waiting on my appointment!!

    Thanks again for all your help. I joined the health unlocked forum for IBS tonight but dissapointed to find there are no tags for painful sex...and there is no health unlocked forum for vaginismus in general. What a pity! Take care ladies wish you all the best xxx

  • I experience the same symptoms as you when having sex! Burning and sharp pains! I had to see a sex therapist who thought I was suffering from vaginismus which also didn't make sense to me as I had a perfect sex life before! I then continued to see my GP until they referred me to a gyno! I have endo but also believe I have vaginismus as I am fearful of the pain! It's an ongoing thing but hopefully you will get to the bottom of it! Good luck x

  • HI! I know you posted two years ago but I just read your story and it sounded very similar to mine. I had a thought for you: Have you considered a gluten allergy or intolerance? I was diagnosed with endo, IBS, vaginismus and had trouble with fertility. My MD did a transvaginal ultrasound and saw a lot of inflammation. He recommended I obstain from grains and processed foods/sugar. I ate more veggies and grass fed meats and stayed away from grains and legumes. In two months I got pregnant (after trying for a year), bloating and fatigue reduced significantly, painful sex even improved! Now about 6 months later I am pain free during sex, IBS symptoms abated and my endo doesn't give me much trouble. Another note: my doctor tested me for a common enzyme deficiency due to a genetic abnormality that occurs in 20% of the population called MTFHR. He was right and i was deficient. This enzyme deficiency can cause many serious long term health issues but it acts slowly so many don't put it together (heart disease, diabetes, depression, anxiety, frequent miscarriages, fertility issues, etc). Treatment is simply high doses of B vitamins! Something i can totally live with!

    Hope some of this is helpful and good luck on your health journey!

    -J

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