/r/Interstitialcystitis

Photograph via snooOG

A place for sufferers of the chronic bladder disease interstitial cystitis (IC; also known as painful bladder syndrome or PBS) to share advice, give support, ask questions, and give answers.

Welcome to r/InterstitialCystitis, the support forum for IC/PBS and other bladder problems! Join us in the r/InterstitialCystitis Discord channel to live chat any time! Who we’re here for:

  • People with Interstitial Cystitis/Painful Bladder Syndrome

  • People who haven’t been diagnosed with IC/PBS but suspect they may have it

  • People with other bladder/pelvic problems (Overactive Bladder, prostatitis, chronic urinary tract infections, pelvic floor dysfunction, ect.)

  • Family and friends of people with IC/PBS

  • Anyone interested in learning more about this illness

Anything related to IC/PBS, bladder problems or life with chronic illness is welcome! Please feel free to submit any links, articles, personal stories or anything else related to interstitial cystitis and living with interstitial cystitis. It doesn’t matter if you’re unsure whether you have IC, if you think your question has been asked before, or if you don’t really know what to say. Please start a thread or contribute to our weekly check-in thread.

If you’re new to IC and overwhelmed, “Resources” below has some helpful links to get you started. Together, we can find a cure for the phrase “What doesn’t kill you makes you stronger.”

Rules:

1. Respect - Please be kind, considerate, and respectful of everyone here. We all walk a long, difficult road, so let's help each other out :)

  • Disrespectful comments include things like insults, excessive snark, discouraging people from posting or asking questions, questioning the validity or seriousness of others’ symptoms, and sexism/racism/homophobia/transphobia etc. A first offense will result in a warning, second offenses result in a temporary or permanent ban at the discretion of the mod team.

2. Don't Spam Users About Embedded Infections: All new posts about embedded infections are welcome, but not all comments are welcome:

  • If someone is NOT asking a diagnostic or infection-adjacent question, please do not bombard them with information about how IC is “really” an infection.

  • DO NOT discourage people from seeking testing or treatment for an acute infection. These comments will be removed.

3. Don't Shame Users for Refusing a Treatment/Diagnostic Method:

  • Diet is not for everyone. Especially for those with eating disorders. If someone isn’t interested in changing their diet, don't persist in telling them to do so.

  • Physical therapy is not for everyone. For some people pelvic exams are impossible and PT can be triggering.

  • Invasive testing like cystoscopy or urodynamics are not for everyone. Some people can't tolerate them at all. Do not shame anyone, ever, for their decisions around testing and treatment.

4. Spam: Obvious advertisements, irrelevant links, and inappropriate content will be removed and posters will be banned. If you have a personal blog you would like to link to, please participate in the subreddit for a bit before linking. Links to blogs from non-contributors may be removed. If you are part of a research organization or student looking for participants for a study or project on IC, please contact the mod team before soliciting the subreddit. All studies must have appropriate IRB approval from the supervising institution and ensure confidentiality.

Reminder- No one here is an expert, so always consult your own provider. Try to avoid diagnosing other members or prescribing treatment regimens for them. Suggestions for new things to pursue are great (i.e. "Have you tried X yet?", "X helps me a lot"), orders are not (i.e. "Stop taking X", "You need to take X").

Resources

Similar Subreddits

Please tell your friends, family, or anyone who might be interested in IC related news, advice, or support about this subreddit! The more we grow, the more we can help ourselves and each other.

/r/Interstitialcystitis

23,703 Subscribers

1

Is urogesic (sp)

Is urogesic blue the same as uro-mp?!?

0 Comments
2024/04/17
22:43 UTC

3

Suggestions for improving libido?

My profile: 34F. 2 years of IC. Most likely started due to either frequent antibiotics use specifically cipro or frequent UTIs + extreme emotional stress from work. Had a very high libido before but upon the wake of ic symptoms + work stress, my libido starkly disappeared within a month span (and I sprouted clusters of gray hairs in the front bangs area). Blood test shows hormones are all normal. Never taken antidepressants. I’m devastated and desperate as having no libido has negatively impacted my marriage.

Symptoms: Physical—very little nerve sensation around clitoris. Dull sensation in gspot. Emotional—no arousal at all. I’ve tried maca root, d-mannose, aloe Vera, changing diet, pelvic floor therapy and while other IC symptoms have improved, libido is the remaining symptom that hasn’t budged.

Ask: has anyone had success with improving their libido? Thanks 🙏 in advance.

3 Comments
2024/04/17
19:16 UTC

9

Possible link between IC, histamine intolerance, autoimmune, menstrual cycle

24F. I haven’t been diagnosed officially but after recently getting two UTIs in a row, I believe I may have IC. I had been having bladder/abdominal pain for a while prior to the UTI symptoms showing up but I never made the connection since this was the first time I’ve gotten a UTI (that I know of). I also struggle with acne, high A1C despite being a healthy weight, CPTSD, and autoimmunity, specifically Hashimoto’s and an unspecified connective tissue disorder: likely Ehlers’s-Danlos.

My main symptoms are swollen and painful joints + cysts mostly in my hands and wrists, also hips. The rheumatologist wanted to put me on plaquenil but I noticed that my symptoms were greatly reduced and sometimes unnoticeable when I simply adhered to a gluten free, low sugar diet. Then I figured out that chocolate and caffeine also cause bad flare ups for me. As does certain phases of my menstrual cycle (luteal), and low pressure systems aka rainy, stormy days.

Just last night I was doing research on IC/UTIs and started going down the rabbit hole of antibiotics, probiotics, and autoimmune responses. I came across some information that possibly changed everything for me. ALL of the foods that cause flare ups for me either contain histamines or cause histamine release. Which in turn causes inflammation and autoimmune response. And guess what? Estrogen also triggers the release of histamine, which rises during the luteal phase. Guess what else causes histamine release? Fucking low pressure weather. Histamines and blood sugar/diabetes are connected as well. I’m baffled that I’m just now finding out about this.

Additionally, I’ve been eating probiotic foods like kombucha and yoghurt to counteract the side effects of the antibiotics, but I came across research that certain strains of bacteria in probiotics trigger histamines and can cause issues in people with an intolerance. Which could explain why my joint pain has not resolved despite UTI symptoms going away. Going on new medications can also cause histamine release.

To further back up my theory, I compared low histamine diet to an IC diet, and they are extremely similar. I’m convinced that histamine/mast cell issues are at the root my health problems and possibly thousands of other people. We already know that the vast majority of autoimmune and IC sufferers are women, which makes me think that hormones, namely estrogen (and it’s link to histamine release), play a role in this for some people. It surely explains my flare ups during luteal phase.

Now I’m not an expert or a Dr, nor am I trying to claim that diet is a cure all, I just wanted to share my personal experience in case someone can relate. Thankfully there’s more and more research coming out about Histamine intolerance and Mast Cell Activation so I hope it will lead to better knowledge and treatments. But for me personally, diet and addressing the root cause have helped me immensely.. Same goes for mental health treatment. I’ve experienced remission of physical + emotional trauma symptoms when adhering to a strict diet and mental health regimen/therapy without any medication (besides levothyroxine). Everyone reacts to different things but the major players in my flare ups are wheat/gluten, sugar, caffeine, chocolate, and likely dairy + other foods.

Let me know what you guys think.

1 Comment
2024/04/17
15:27 UTC

1

Why is my IC “gone” after giving birth?

I developed ic a long time ago after getting a bunch of back to back utis anytime i had sex with a past partner. I was dealing with pretty much 24/7 urethral burning that i could only make go away if i stayed hydrated, and slight bladder pain while peeing. I just gave birth 18 days ago and ever since then so far i havent had any urethral burning or felt the need to chug multiple bottles of water a day. I still feel a tiny bit of bladder pain when i pee but it isnt horrible. Has anyone else thats given birth had their ic vanish or just know why this happens after having a baby in general? Im hoping it stays gone even though i have a feeling with my luck itll eventually probably come back. But this is the longest ive went without any burning pain usually id be able to have maybe 3 days max without a flare but its been 18 days and no pain still!

0 Comments
2024/04/17
08:17 UTC

1

Some personal questions for you all

I am new here but trying to figure out more about this condition, have some questions (I will be mostly referring to earlier stages in life like puberty)

Are you carrying sexual trauma? (Shame, betrayal, disease) Did IC develop around these events? Have you suffered digestive problems in the past (constipation, IBS)? Anxiety/depression? Did these problems subside and IC took their place? Do you wake up in the morning feeling fine, but as soon as your mind and body wakes up as well to start the day(thoughts, worries), your symptoms start kicking? Do you feel like it has to do with emotions you are repressing? (Anger, denial, worry) Are you shy, introverted, independent/self sufficient? Are your hormones balanced? (Eg. High testosterone in women, low testosterone in men) Have you ever measured your cortisol levels in a clinic? Do autoimmune conditions run in your family? (Mostly curious about mother) Do drugs/alcohol make you feel better (during effect)? Have you tried TCM? Do you believe you have an energy blockage, leading to poor flow to your genitals?

0 Comments
2024/04/17
08:26 UTC

3

Can IC causing bladder tingling/spasms like this?

Posting here because I’m not sure where else to begin.

Can you have IC without urethra pain and mostly only with bladder/lower abdomen pain?

Sooo, two weeks ago I started having acute stabbing pain starting at the bottom of my belly button and in a direct line down towards me pubic bone. It was pretty bad for about 24hrs to the point where it hurt to stand upright, but then it radiated out towards where I thought my uterus/ovaries are, but basically towards lower abdomen area. It felt like a weighted heaviness and pressure on my bladder, as well as constant tingling that grew more intense in waves. I also feel as if I have to pee more frequently. And am pretty distended in my lower abdomen area, belly the GI system. My most irritating symptoms is the tingling and discomfort in my bladder, it’s constant and feels like it wavers between a 5-7 on discomfort/pain scale. With these waves of intensity also comes nausea and dizziness. The lower belly button pain is starting to come back too.

I brought up my pain to my provider thinking it was nothing. Welllll, turns out they found a surplus of amorphous crystals in my urine, trace amounts of blood (hemoglobin and white blood cells), pungent odor, as well as epithelial cells and slight cloudiness. No signs of UTI or infection so far.

Does this sound like symptoms of IC?? Am also hypthesizing kidney/bladder stones.

I have a few chronic illnesses, Mast Cell Activation Syndrome (MCAS) being one of them. Which I know can sometimes cause interstitial cystitis, but I’m new to understanding it and am honestly scared to have yet another chronic illness.

I’m on a pretty restricted diet due to MCAS, and have read that high protein diet, along with dehydration can cause an increase in kidney debris/issues. Am currently on Ketotifen which I noticed dehydrates me.

Additional info: GI issues, appendix, STIs, and pregnancy have all been ruled out. Unlikely to be uterus related too, although I do have PCOS. I’ve been hydrating a lot the last few days but symptoms seem to be slowly getting worse.

4 Comments
2024/04/17
10:51 UTC

4

Taking a 6 hour car ride leaving in two hours. What helps for motion sickness that will not make me flare?

About to embark on my biweekly drive- last time, I had just started the supplements and in didn't know if that's why, but I start getting motion sickness for the time ever in my life. I threw up and was heaving so hard it forced urine out and it hurt really bad, for days after . I'm trying to not repeat that again.

So I was going to get some of that dramine for car sickness. I've never had it before and I am praying it works. What do you use, that will not set your bladder off??

5 Comments
2024/04/17
10:19 UTC

3

Why

What do you think abt non-stop symptoms for already 3 years,urgency frequency

1 Comment
2024/04/17
07:45 UTC

1

?

Doctors find inflammation and white tissue in my trigone area,and ended up saying it's somatic,and didn't give any treatments after...

0 Comments
2024/04/17
07:43 UTC

1

Will I get used to birth control?

I just got diagnosed with endometriosis and ovarian cysts so I was recommended to go on hormonal birth control to help my symptoms since they’ve been getting worse. I’m a week in and it’s flaring my IC symptoms quite a bit.

Is there a grace period to this? Will my body potentially acclimate to the hormonal changes after awhile? It’s been pretty miserable to say the least

*It’s a low estrogen pill

4 Comments
2024/04/17
07:30 UTC

24

Finally feeling better after months of pain -- a breakdown of how I finally managed my IC

I've made a lot of posts here over the past few months. If you comb through my profile or search my username you'll find them. I was really scared and upset during that time. I wanted to give an update and offer newcomers some hope.

I am a trans man. I've been transitioning for 5 years on hormone replacement therapy. In very rare cases, things can get out of balance and cause health complications. Though I haven't been able to pinpoint it exactly, I believe that my testosterone got too high which caused pelvic floor problems and eventually lead to IC.

I started having symptoms of Pelvic Floor Dysfunction last September. One day I was fine, the next day I was having pain. Then the pain got worse. Whenever I tried to have sex or masturbate I would be in pain for days afterward. Looking back, I can see now that the doctor I had at the time was not comfortable treating a trans patient. He told me I would need to see someone else for treatment. So my symptoms went untreated until I found a different doctor.

I started estrogen cream in October which didn't help, then switched to tablet suppositories in November which worked better. I also started pelvic floor therapy at the end of November into December and it helped a lot with my day to day pain. Up until that point my symptoms were mostly PFD related. I had some dietary triggers but nothing major.

At the end of December I had a flexible cystoscopy without anesthesia. It was the most painful and traumatic medical procedure I've gone through. I got diagnosed with IC. A few days after the cystoscopy my pain died down again.

I was prescribed hydroxyzine. I tried it for a week and a half. It made me super constipated. To this day I don't know if the constipation or the medicine itself set me off, but all of a sudden my IC symptoms went from a 3/10 to 8/10. I had terrible bladder spasms 24/7 and all the hallmark symptoms of IC. I also developed dietary triggers I had never had before. In hindsight, I remember my symptoms were slowly increasing, and perhaps it was inevitable that I'd eventually develop full-blown IC.

I was very upset and scared. I had been feeling better, then all of a sudden I felt worse than ever. I fell into a deep depression. I woke up and just waited for the pain to start. I had to drop out of my college courses because I couldn't focus on schoolwork. Work was hell. I could barely eat because I was so scared I'd flare and I lost 10 pounds from December to February. Some days I would flare up and lie down in bed crying at the though of going to work in 30 minutes. I also had to taper down my testosterone, which was very difficult for me mentally and physically.

Nothing seemed to help. The first problem was my original urologist office. The staff there wasn't very professional and I didn't feel heard or respected. They put me on OAB meds after hydroxyzine and didn't seem concerned about how much my pain had increased.

My PCP referred me to an OBGYN as well as a new urologist. While waiting for those appointments, I decided to do my own research. I cut down my diet extensively (I'm vegan, so it was difficult losing access to soy products!) and started Desert Harvest Aloe Vera. This helped with general irritation but my pain was still pretty bad.

In February I went to the OBGYN who prescribed me amitriptyline. By this point I had tried hydroxyzine, myrbetriq, uribel, and gabapentin, so I wasn't feeling too optimistic. But I stuck it out and I'm so glad I did. I started at 25mg and went up to 50mg after three weeks. By the end of March I hit the 8 week point and my pain levels had dropped so low I was basically pain free outside of flares.

I also started Cymbalta to help with my depression. I didn't realize how depressed I was until I started taking meds. After a few weeks I felt like a completely different person and my pain levels dropped along with my stress and anxiety.

I am now able to have sex and masturbate again. I also managed to take a trip overseas and survived an 8 hour flight. I've only been able to open my diet up a little bit, but when I do branch out the flares are very mild and generally only last a few hours, especially if I drink lots of water after I eat. I am now eating healthier and cleaner than I ever have before. IC made me drop most processed foods and sugars and eat better foods. I've also ditched coffee entirely for Teeccino, which I honestly prefer over coffee now.

When I first got diagnosed I was in so much pain and felt so terrible mentally that I relapsed with self harm after 8 years of being clean. It also strained my marriage and my relationship with my wife. It put my schoolwork on pause and thus my planned career change. It also made it difficult to work at all, or even take care of myself or keep my apartment clean.

I am doing much better today than I ever thought I would when I was at my lowest. I've realized by now that I'll probably never go back to how I was before I got IC, and that's okay. I've learned so much throughout this whole process. I feel better mentally than I did before I had IC, because I was forced to get help for my mental health. My relationship with my wife is stronger than ever too--we started couple's therapy to help navigate the stress of my diagnosis, and it's been a huge benefit to us.

I miss not having to deal with pain and always being conscious of how things will flare me. I miss being able to eat whatever I want. I'm also still having bladder spasms every day, but they are so minor I hardly notice it anymore outside of a flare.

But the things I've had to do to adapt and overcome this diagnosis have been a net benefit which far outweighs the losses I suffered. I went from feeling the worst I've felt physically and mentally, to feeling the best I've felt in years.

I am more happy, confident, grateful, and at peace nowadays than before I had IC. It's made me take stock of what is actually important in my life. It's helped me open up to my friends and family. It brought me closer to my wife. And most of all, I've learned that I can get through anything with enough time and patience as long as I have the strength to look for help.

Here's a list of what I'm currently using to manage my IC:

  • Desert Harvest aloe vera
  • Amitriptyline 50mg
  • Cymbalta 30mg
  • Compounded valium/baclofen suppository every night before bed
  • Pelvic floor PT and exercises
  • Pelvic wand at home
  • Inferential current unit (think fancier TENS unit) used as needed to relax my sacral nerve
  • Ditching super processed foods
  • Only drinking water, peppermint tea, and Teeccino with oat milk
  • I use this seat cushion at my desk, and I also took it on the train and plane with me for my recent international trip. I swear I am never leaving the house without it again haha

I'll probably update this post as I continue adding to my treatment plan. I'll also eventually write more about my diet and how I eat now as a vegan with IC.

Lastly, I want to thank everyone on this sub who helped answer my questions and comforted me whenever I vented here. It really helped me and I wanted to make this post as a way of paying it forward.

9 Comments
2024/04/17
03:49 UTC

2

Los Angeles area PT? (plus cost discussion)

Hey everyone!

I'm relatively new here, a few months in. Because of my symptoms I'm looking to try PT but have been daunted by the cost. My main question is if anyone has any recommendations in or around Los Angeles. Follow up, regardless of area, in your experience is it necessary to do ongoing sessions, or can one or two work out?

I work retail so I doubt my insurance would cover PT, even if I could find one which was in network.

Thanks in advance for any tips! I've been researching the best I can but sometimes struggle with scattered resources.

0 Comments
2024/04/17
00:29 UTC

7

What do you think about this theory?

Pelvic pain and urinary urgency - the main symptoms of interstitial cystitis/bladder pain syndrome - are also caused by urogenital descensus and can be cured surgically in high percentages. As this is not described in the current guidelines, a paradigm shift is required.

Keypoints

IC/BPS management requires a paradigm shift, as current concepts are not satisfactory. A prospective study shows that the majority of IC/BPS symptoms in women are probably caused by vaginal prolapse. In women with IC/BPS symptoms, a urogynecological examination should be performed to detect prolapse (including grade 2). Simulations can provide individualized indications in affected women to find possible indications for long-term surgical cure of IC/BPS symptoms.

From German website: https://www.universimed.com/de/article/kardiologie-gefaessmedizin/interstitielle-zystitis-blasenschmerzsyndrom-paradigmenwechsel-353992

3 Comments
2024/04/16
23:41 UTC

3

Does anyone know of a discount, coupon, or code for DH aloe vera?

I just realized that because I upped the dose to three times a day, I have 9 left. I get paid tomorrow, and then have to wait 14 days again!! So it looks like I have to buy these again in order to keep taking them. That count was at only 6 a day if I dropped one dose it would be 9 days . I have to cover rent and a bunch of crap so I'm wondering if anyone knows of any discounts or anything that can make these cheaper? I am aware that this brand uses a specific process and I will get them regardless but it is literally going to effect my groceries I will need to take that 70 dollars from the 175 dollar grocery budget . Regardless the benefit is worth it. That company is making a ton of money lol.

1 Comment
2024/04/16
22:19 UTC

2

How long did it take for your first flare to resolve?

Been in a flare since December 19th; officially diagnosed with IC in January. I’m seeing a specialist and trying all the usual treatments. Just curious how long it took others to resolve their first flare.

I know there is a lot of trial and error involved, and meds take a while to work. Trying to be patient and optimistic.

11 Comments
2024/04/16
22:14 UTC

2

How does IC start?

I thought I just had a tight pelvic floor but now I’m told I have IC? Could it literally just come on overnight?

5 Comments
2024/04/16
21:36 UTC

6

Update since going to ER & Holy Hydroxyzine 😳😳

Hello,

I've noticed a lot of people seem to be having flares get out of control at this time of the year.

Anyways since going to the ER, I was not able to pick up the hydroxyzine that night bc I live in Milwaukee, and guess what time the pharmacies close?? 6pm,!!!!! 🫠 It's pretty bad in this city, that many of them get robbed and held up that there is only one or two 24 hours ones and they are not right in Milwaukee where I live they are in the next town 😳. I had to wait until my husband got home from work the next day yesterday to pick them up. They gave me 15 25 mg hydroxyzine at my request bc after the urine screen came back "great except for a large amount of microscopic red blood "( I'm thinking about copywriting that term and adopting it)- he asked me if i could think of someyhing that might help and he would let me know if they could give it to me from the ER .I was also going to ask for amytriptalyne lol but i thought, I'm not pushing my luck .hearing the US results is becoming literally a broken record. I can make hats and shirts. I've heard it so much it's a mantra now

"Looks perfect!! Just a large amount of microscopic red blood ©️" 😁😬

Anyways , I took one hydroxyzine and about 45 minutes later, I noticed somewhat of a difference, but I was still having active bladder spasms which are now new, it feels like it's flicking their finger against my bladder wall and it i breathe in too hard and try to hold a breath it feels like it hurts to stretch too much. So I took one more.

I had also at this point found my valtrex which is being prescribed by a urologist for this bladder issue, they have a hunch that HSV May be a component of this somehow possibly through being embedded in the bladder or in the urethra but I need a cysto & biopsy to confirm that. Until then , valtrex everyday because it is known to have very strong anti inflammatory properties apparently 🤷. At the point last night by the time I took the dose of hydro, I had been back on my valtrex for 2 full days.

Within an hour, I could feel that my urethra definitely got "unswollen". One of the big symptoms that flared up here was my urethra felt like it was twice as big as it really is, and it hurt to put my legs together laying down, I had to have a pillow in between them . It even was to spasm along with the bladder before I had to the ER. I actually fell asleep for 3 and a half hours without waking up one time !!! I have woken up every hour pretty much to have to pee since this started when I go to sleep at night. When I got up to go there was minimal pain in my bladder and afterwards there was not burning. I went right back to bed, and slept another 4 freaking hours 😳. I got up, and I did not have the overwhelming urge to hurry to bathroom. I did have to go but it was not too painful at all getting there. I did notice that my pee smelled a bit. Not rancid or bad but it smelled stronger I could somewhat smell it when I was done going but it didn't hurt and was crystal clear like usual (besides the skin cells 😬).

All day today, this has been the best day I have had in a very long time. I continue to take the valtrex . I am aware that it is likely the combo but there was a DEFINITE difference from this. I personally needed 50mg . I HAVE been on this in the past for anxiety but it was at 100mg I do know it is safe to take at that dose.

My plans are to get into my family doctor in the next day or two, and ask her for some hydroxyzine to take nightly until my appointment . Because this is an antihistamine and it is not addicting or have any serious effects, I can't see why they wouldn't.

So I would definitely suggest trying this medication. My blood pressure was going towards the 200s because the pain was not controlled with pyridium,Tylenol,Advil, and i also had taken a few of the pain pills i do have for a different condition, which are methadone tabs, and until i took this antihistamine i was starying to get downright desperate and afraid!

How does this work so well?!?!?!!!

1 Comment
2024/04/16
21:24 UTC

1

increased pain as bladder fills

anyone here have this?

anyone here gotten RELIEF from this?

2 Comments
2024/04/16
21:22 UTC

1

First bladder instillation

Hi everyone, I had my first bladder instillation today. I am having extreme nausea, and fighting the urge to throw up. I have not eaten all day, and took the antibiotic after the procedure. Do we think that is what is causing it? Or should I be worried?

1 Comment
2024/04/16
20:54 UTC

1

Advice

Hi all,

I haven’t formally been diagnosed with IC, but it started off as a positive UTI which hasn’t nt cleared. My only symptom is burning after i pee, ive read most people with IC feel relief after they pee and i dont so im just thinking its an Embedded UTI. Whats everyone else thoughts?

3 Comments
2024/04/16
19:21 UTC

12

Had a great appointment today with the uro gyno!

Hi all! I had an appointment with a new urogynecologist today, and I just wanted to post about it to help others and encourage others who are maybe worried or scared about seeing one! The appointment went very well. She prescribed pelvic floor PT, and recommended a place in Orange County, CA where I live, called Pelvic Sanity.

She also prescribed internal valium/baclofen suppositories, and a 30 day supply of oral muscle relaxers (Flexeril,) to use at night for spasms, and it is supposed to help you sleep too. I have low libido and sensation too sometimes, so she prescribed a compounded cream of viagra/testosterone/arginine too to apply before sex, and it is supposed to increase blood flow and sensation. I have suffered with low libido I believe from all the pelvic floor tension and emotional trauma of the pain.

We also have a follow up in 3 months. She recommended I stay on my gabapentin 600mg twice a day. I am hopeful my flares will die down, they have been horrible for like 10-14 days out of the month, consistently now for two months.

5 Comments
2024/04/16
19:08 UTC

3

Don't give up! I'm trying combo of Elavil, CBD:THC balm, and norethindrone

I'm in a going on 10 month long flare up, which has been total hell. I finally gave in to dr. and tried Elavil and saw a endo specialist who prescribed norethindrone, which should help you if you suspect endometriosis is a culprit.

Elavil: I think it helped me at first, then flare up came back. I felt high as a kite for two weeks then it wore off. I upped my dose and am still flaring so TBD on if this will help in the long run. I DO feel like it has helped with my depression and sadness around this terrible condition.

Norethindrone: I suspect that I have endometriosis and the specialist I finally got into after 2 years of complaining about pelvic pain agrees that endo is possible. If you have pain all the time, it could mean you have lesions on your organs that cause pain all the time (I was lied to about this before and it kept me from seeing a specialist sooner). Norethindrone helps supress endo anywhere in the body so TBD on if this is going to help me while I wait for surgery.

Pain management: I found this CBD:THC cream from Papa&Barkley that you apply like lotion and I feel like it has really helped me during the highest peaks. I've just been rubbing it over where my bladder is and feel like it does help with pain and help my muscles relax from the spasms. I've even gotten back up to the gym. Even if it's placebo I'll take it!

2 Comments
2024/04/16
18:41 UTC

16

will this last forever?

i’m so tired.

my symptoms when this started in october of last year were only frequency, slight urgency, urethral discomfort and pain upon filling. i had a hydrodistension in november and after 3 weeks of that & 3 weeks of taking OAB bladder medication, i got relief. i wasn’t “normal” but my bladder didn’t bother me anymore other than i peed more than the average person still. i could hold my urine longer.

mid march symptoms started coming back and have progressively gotten worse since then. a constant ache in my bladder, pain upon filling (i can barely hold 30cc) urethra discomfort, frequency and now severe urgency ( i feel like i have pee stuck in my urethra) & i have general awareness of my bladder. i feel like i have to pee CONSTANTLY. even sitting on the toilet after i’ve just finished peeing. im waking up every hour to pee at night. i’m exhausted.

i keep seeing posts about “end stage” and since my capacity is so low and im having pain with it, will i need my bladder removed? or am i getting ahead of myself?

i have two young kids i need to care for. i feel bad for them. i feel bad for my boyfriend (we just started dating 2ish months ago but have been seeing eachother since november and he is SO supportive, but im afraid of losing him because of this). i feel like a burden to everyone i love.

my anxiety is crippling. i can’t function. i can’t eat (i haven’t eaten in 4 days). i’m barely drinking because if i drink too much i literally won’t be able to leave the toilet.

my urogyn is TRASH. i hate her. i have an apt with a PA tomorrow but i don’t think there’s much she can do for me. i have an apt with a new urologist in August but idk if i can wait until then. i’m literally crippled from anxiety.

i’ve been taking magnesium, pumpkin seed oil, AZO, oxybutynin, tylenol, turmeric, & claritin for about 1ish weeks consistently.

im terrified this is going to be my life forever and if it is, i don’t want it. i’d honestly rather die. but then again, i don’t want to do that to my kids. someone please help.

31 Comments
2024/04/16
15:05 UTC

6

Botox in the bladder (please only positive story’s!!!)

My PT told me that a little bit of Botox in the bladder also relaxt the pelvic floor. I have a tight pelvic floor with constant urg/freq to pee. I’m 5 months in PT now and do everything but nothing change. I want to hear positive story’s!! I’m so afraid it don’t work of retention. If I do it I want a little bit Botox, just little to start and see what happen. If it’s okay, then I put more Botox. Please give me some message back for some hope

66 Comments
2024/04/16
14:01 UTC

0

I can't understand the problem

One time, I was stroking my penis, and while I was doing that, I felt discomfort in the middle of the pelvis. I think it was the bladder or a completely nearby area, accompanied by pain in the lower back, but exactly in the middle of the pelvis. After two days, the pain intensified and the pain became constant, especially when I sit or lie down, and after I finished urinating, I felt a strong burning in my pelvis. Bladder area I don't understand what is my diagnosis?

0 Comments
2024/04/16
10:39 UTC

2

Can using oestrogen in vagina trigger bladder ?

Long story short, I’ve been asked to take probiotics suppositories mixed with oestrogen for my vaginal flora.

It’s been two months now, and my bladder started to hurt a month ago (which I never had before).

I’ve never used any form of hormones in my life before this suppository (no birth control, no IUD, no nothing)

Could this be a trigger for my bladder ?

My bladder feels full and hurts, it’s like a tickling sensation but not in a pleasant way, I pee way more and it’s just few drops.

Any info would help Thanks !

8 Comments
2024/04/16
09:35 UTC

3

How long does it take for aloe Vera to work

I’ve been taking 3 capsules of desert harvest aloe Vera twice a day for nearly a month. I’m struggling to tell if they are working or not. I’ve had a few good days while on them but also some bad days but I haven’t noticed any major improvement to be sure they are working. They cost a lot so I don’t want to keep buying them if they aren’t working, if you take them how long did it take to notice a major improvement? Do you think I should stop taking them?

2 Comments
2024/04/16
07:37 UTC

1

Aleo Vera and frequency

Anybody had success treating frequency and nocturia using aleo vera pills?

0 Comments
2024/04/16
00:24 UTC

1

Antibiotics and Probiotics together?

Hello,

Has anyone taken Antibiotics for this? I am wondering if I should start taking a probiotic or hold off until the course is over?

3 Comments
2024/04/16
00:05 UTC

2

Mixed flora urine culture

Have any of you had a urine culture that says “mixed flora”? I went to urgent care a few days ago thinking I could possibly have a uti because I was having a bit of pressure after urinating. The urinalysis was negatives no leukocytes, blood or nitrites. The culture came back today and it said mixed flora. The doctor there said it was likely a contaminated sample. Soo I guess no UTI then? Confused.

6 Comments
2024/04/16
00:02 UTC

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