(only) Flaring after sex - what has worked for you?

[AntiIC03]

Greetings all!

I am newly diagnosed (late Sept '17). I've been married for 10 years, 9 of which have been marked by painful sex which doctors thought were UTIs for years (UTIs have since been ruled out due to negative cultures and antibiotics having no effect). When I flare, it is only (and I mean only) after sex and not at all otherwise - I get a burning urgency pain that comes on several hours after sex and lasts for 4 days, and is worst early in the morning.

One Urogynecologist I saw recently prescribed me hydroxyzine, nortryptyline, alprazolem, elmiron in addition to recommending regular instillations and Prelief. Now, I started on the hydroxyzine - 10mg almost knocked me out, and even the 5mg made me feel like a zombie. I am sensitive to meds as is and my severe IBS-D makes it difficult to tolerate most meds. Being that I only flare after sex, all of the medications and instillations seem excessive to me (and would likely do more harm than good with my sensitivity to meds and IBS-D)

A previous urogynecologist I saw did feel that meds/instillations were excessive in my case, and said that pyridium with sex should do the trick. I also have valium suppositories which have been minimally helpful. Does anyone else have any experience with this/flare only after sex? Has pyridium been helpful? Any advice would be greatly appreciated - Thanks!

[Songbird]

Re: (only) Flaring after sex - what has worked for you?

It’s lousy. I can’t even do that anymore. Excruciating pain afterwards. Ice and aspirin for me. Just terrible. You have some good strategies though. Others on here have much better ones than I do.

[ICNDonna]

Re: (only) Flaring after sex - what has worked for you?

There's a post at https://www.ic-network.com/forum/sho...r-Great-IC-Sex that may be of help to you.

Donna

[AntiIC03]

Re: (only) Flaring after sex - what has worked for you?

To reply to my original thread, pyridium definitely did not do the trick for me I am on day 10 of what I think is a flare (not sure - but my last two flares have been longer than the 4 days they used to be) - I've gotten a urine culture for UTI from my doctor but an at-home test showed negative for UTI, and now I am just waiting for the culture results (which will likely also be negative, as they usually are). The only thing that helps me sleep through each night are valium suppositories. I just made an appointment to see my 9th doctor about this (yes, 9th - a urologist). I am not 100% convinced it is IC, this happens only after sex and not at all otherwise - has anyone else experienced this? I am having trouble sleeping, functioning at work and at home - and am feeling so frustrated and defeated.

[Songbird]

Re: (only) Flaring after sex - what has worked for you?

I truly sorry for you. I have the same issue with sex so I had to stop making myself sick and losing days of productivity and nights of sleep . The pain and flaring for weeks just wasn’t worth it anymore.
Pyridium doesn’t help me either. And I would always think I had a horrible uti and cultured negative.
I think, well, I dont know what to think. I hope you can find some answers and go on to live your life in a more “normal” fashion.
Others have found ways and maybe you will be able to as well.
Just wanted to Respond even though I dont have any sage advice. Take care.

[ICNDonna]

Re: (only) Flaring after sex - what has worked for you?

To reply to my original thread, pyridium definitely did not do the trick for me I am on day 10 of what I think is a flare (not sure - but my last two flares have been longer than the 4 days they used to be) - I've gotten a urine culture for UTI from my doctor but an at-home test showed negative for UTI, and now I am just waiting for the culture results (which will likely also be negative, as they usually are). The only thing that helps me sleep through each night are valium suppositories. I just made an appointment to see my 9th doctor about this (yes, 9th - a urologist). I am not 100% convinced it is IC, this happens only after sex and not at all otherwise - has anyone else experienced this? I am having trouble sleeping, functioning at work and at home - and am feeling so frustrated and defeated.

I noticed that you will be seeing a 9th doctor --- sometimes it is better to work with one doctor to find a diagnosis and which treatment options work best. Hopefully, the doctor you will be seeing is one who will work with you to help you feel better and with whom you can communicate --- unfortunately, the same treatments don't work for every IC patient and it can take a while to find the most effective one.

If you do a forum search for "Jen's tips for great sex" you will find a post that may be helpful to you, whether or not you have IC.

Warm healing thoughts,
Donna

[MelindaP]

Re: (only) Flaring after sex - what has worked for you?

I’m sorry you are dealing with this! Have you looked into pelvic floor dysfunction? Might be worth your while to get a referral to be evaluated for this since it just occurs after sex. Please keep us posted!

[AntiIC03]

Re: (only) Flaring after sex - what has worked for you?

Thank you all for the replies. The kind words and empathy mean a lot right now, so thank you thank you
re: the doctor situation, believe me, if I could have stuck to 1 doctor I certainly would have!!! I'm only on my 9th doctor because the first 6 were not helpful/misdiagnosed me, and I've moved 3 times in the last 10 years. During that time, I have been mis-diagnosed with UTIs (negative cultures), checked for STDs & candidiasis (negative), mis-diagnosed with Pelvic Floor Dysfunction (6 months of weekly PT was not helpful at all, and this was determined not to be the main cause of pain), and most recently interstital cystitis. The 2 most helpful doctors were located at a distance, and I cannot see them regularly. At least through all my work with previous doctors I am now more on the right track & know for certain that the pain is bladder-related. I'll be seing a local urologist soon. I am a bit skeptical of the interstital cystitis diagnosis as this always happens only after sex and while I feel fine during, I literally feel "injured" several hours later. The pain usually disappears suddenly after a couple of days, but this time I am at 2.5 weeks of pain and it's not budging. Drinking a pinch of baking soda in water, hot showers and sleeping on my stomach are the only things that have been remotely helpful. Hoping the urologist can give me an answer!

[MelindaP]

Re: (only) Flaring after sex - what has worked for you?

Hmmm I know you said PFD was not an issue but the fact that Valium suppositories gives you a bit of relief makes me think it might be somewhat musclular in nature? Perhaps it might be worth it to visit a specialist in vulvar- a uro gyro. Maybe google a urogyno or vulvar specialist in your area.

[AntiIC03]

Re: (only) Flaring after sex - what has worked for you?

Thank you for this reply! The valium suppositories helped me very minimally (took a bit of the edge off of the urgency @ night so I could sleep past 3AM - but did nothing for me during the day) I've seen 3 uro gynos and all 3 have ruled out PFD (when I did 6 months of weekly PT for what one initially thought was PFD, the PT said I "plateaued" and we saw little/no progress). As all 3 believed the issue was in my bladder, I will be seeing a urologist next!

[AntiIC03]

Re: (only) Flaring after sex - what has worked for you?

So update - I went and saw the urologist today. He is not 100% convinced I have IC due to me flaring only after sex, but also said "no two cases of IC are the same". He wants me to do a cystoscopy with hydrodistention to be able to make a definitive diagnosis. Has anyone had this procedure? Did it help to diagnose? How did you feel afterwards? I want to do this procedure as a way to work towards bettering my health (especially after a recent GI scope which may have saved my life!), but am wondering what others' experiences with it have been.

[Susie2271]

Re: (only) Flaring after sex - what has worked for you?

Do you know if it is a cystoscopy done in office? Mine was under anesthesia in August 2006. I remember the nurse saying I would feel like I had to "go" afterwards, but would be groggy so should wait. I didn't and had my hubby help me manage. Boy, it was painful. They did use an instill with lidocaine and other medications that for some IC patients helps them feel better, so there is that. It didn't work for me, but might be beneficial for you. I was given percocet, but 20 minutes later I was like, "When can I take that again?" I remember just riding it out. It wasn't easy, but it was worth knowing I for sure had IC. I started taking Elmiron (100 mg), two capsules in the morning and two at night, as well as Vistaril (50 mg), one capsule at night. I do wonder if you have endometrosis. Pain with sex is also a symptom of that.

I ask about the in-office cystoscopy because my friend Mindy who has been having bladder pain and spasms as well as my Dad, whose problem was prostate, both had the diagnostic procedure awake and in an office setting. I did a search and found this that explains the office procedure: http://www.nickbrookurology.com/cyst...al-anaesthetic.

I will pray for you as you seek help. I am glad you found the IC-Network. Best support group around for IC in my opinion.

[ICNDonna]

Re: (only) Flaring after sex - what has worked for you?

So update - I went and saw the urologist today. He is not 100% convinced I have IC due to me flaring only after sex, but also said "no two cases of IC are the same". He wants me to do a cystoscopy with hydrodistention to be able to make a definitive diagnosis. Has anyone had this procedure? Did it help to diagnose? How did you feel afterwards? I want to do this procedure as a way to work towards bettering my health (especially after a recent GI scope which may have saved my life!), but am wondering what others' experiences with it have been.

There are some doctors who pretty well insist on hydrodistention before they will diagnose IC. Some, however, will diagnose based on symptoms and ruling out other possibilities. I personally was diagnosed by hydrodistention in 1975. Some ICers find that hydrodistention helps with symptom control --- I am fortunate in being in that group and I've had over forty hydrodistentions in my 43 years with IC.

Whether you go that route is your decision. If you opt to do it, I hope you will be in the group who experience remission.


Donna

[irfran]

Re: (only) Flaring after sex - what has worked for you?

Since you only flare after sex, I am wondering if you might have an allergy to the
type of birth control you are using. I believe I have read that some women are allergic to their partners sperm.

I was diagnosed via cysto/hydro under anesthesia. It was unfortable afterward but not too bad. Plan for a few days to recuperate.

We are all different, good luck.

[MelindaP]

Re: (only) Flaring after sex - what has worked for you?

I was one that was diagnosed based on symptoms and other things were ruled out so I never had the Hydro distention. But I believe that it is one of the best ways to determine if you indeed have ic. I would just ask before hand how far they are going to distend your bladder? I have heard a low-pressure distention is much better than a high-pressure distention whi hon can cause more pain afterwards. I totally understand your desire to find out what is causing this pain after nine years! I’m thinking if it is something that you have not tried before, it’s definitely worth doing to get a definitive diagnosis.