Pelvic Pain Support Network
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Possible Endo with interstitial cystitis. Pressure feeling, frequent urination, pelvic pain

My symptoms started 3 months ago with a vaginitis and possible UTI. Got 2 different treatment and I still had pain all over my lower abdomen. It felt like I had PID, but none of the doctors believed my pain, I just had a little inflammation left. Ultrasound and gyno exams were always negative.

Thought I might have an STD, so I went to a clinic, they tested me for Chlamydia, gonorrhoea, mycoplasma, ureaplasma all negative. After the test results , I started to have UTI symptoms , unimaginable pain in my bladder, frequent urination. They did a urine culture , but it was negative. Went back to another gyno, who find at my posterior wall a small painful, movable nodule. He said I might have endometriosis , because of the excruciating pain I was having. Changed my birth controll pills to ones that contained dienogest. The pain lessen, but the.UTI symptoms remained so he prescriebed me antibiotics and uva ursi which help a.little bit , but I still have occasionally pain and pressure feeling in my genital area. I don't know exactly where I feel this but I know something is really off and weird. I haven't been myself in 3 months now. I did the CA 125 but it was in a normal range. I never had painful menstruation before, I am on birth control for 2,5 years now and I absolutely feel nothing. Never had problem during sex. My question is , can this be a sign of endometriosis? The constant pressure feeling and possible urehtral pain? Sometimes It feels like a really bad UTI. I don't want to have an unnecessary lap. But the birth controll pills did lessen my symptoms a little bit. Or maybe I have Endo with interstitial cystitis? My vagina isn't inflamed right know, it doesn't sting when I pee. Does anyone have this weird pressure feeling? Doctors are freaking clueless and I'm loosing hope and this all started with an inflammation, stinging pee that wasn't treated well.

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Hi Edinamalac,

I’m sorry to hear you are suffering. I myself have endometriosis, adenomyosis (endometriosis with uterus muscle) and interstitial cystitis. The moveable lump could possibly be a sign of endometriosis or it could be a fibroid that the gynae felt. Or it might be a tight bunched up pelvic floor muscle as these often occur with pelvic pain. I’ve had to have women’s health physiotherapy myself to sort out this problem. From what you have said and with my own experience I’d say your symptoms point more to interstitial cystitis with the urethral pain and pressure. Interstitial cystitis can in some sufferers cause pain with urination some or all of the time whilst others don’t have this symptom. Another possibility is that because you’ve had a possible UTI that wasn’t treated it’s left some inflammation in the bladder that hopefully will settle down in time.

I would recommend that you see a women’s health physiotherapist who can assess your pelvic floor, see if they can feel this lump and possibly order an ultrasound scan if they feel it’s necessary. It’s possible that the physiotherapist might be able to say there and then no that’s not an area of endometriosis this lump is ....or they might want you to see another gynae to rule out endometriosis. From my experience women’s health physiotherapy is poorly utilised by medical professionals and patients who think it’s only for those patients who are pregnant or postnatal. Even if it turns out it is endometriosis (or any other pelvic pain condition ) women’s health physiotherapy still has a very important part to play in helping with the pain side and it’s management. At this moment I’d probably recommend keeping an open mind on the cause of your pelvic pain, definitely making an appt to see a women’s health physiotherapist and possibly considering seeing another gynae and asking for a laparoscopy to rule out endometriosis as this is the gold standard for diagnosing- until then a diagnosis of endometriosis would be speculative only. Sometimes endometriosis can be seen on scams or the pelvic anatomy will be distorted on scans which would suggest the presence of adhesions but this themselves are diagnostic for endometriosis as they can occur with other conditions. I hope this helps. Please feel free to post and ask as many questions as you would like.

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Thank you for your response! Unfortunately due to my age, every doctor tries to postpone the cystoscopy or the laparoscopy. I even had one urologist say to me that I am too young to have interstitial cystitis and she refused to do a cystoscopy on me. I even went to a private urologist who still thinks I have a UTI....I repeated the urine culture, but if it comes back negative I'll try to find someone who is willing to do the procedure. Even my friends think I am making this up!

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And I do also have pain in my clitoris! I don't know if that can be a sign of IC! And I do feel the pressure around that area!

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Hang in there! It will hopefully be a result of a UTI as your symptoms have been 3 months so there is still time to be hopeful. I’ve had 5 cystoscopies and 4 laparoscopies myself so I can in some ways understand the doctors view on this. With interstitial cystitis there is no bacterial infection so very often the culture comes back negative but you can still get a UTI with the condition. A cystoscopy is useful to rule out other conditions such as malignancy but bladder cancer in a young person is very rare and most cases occur in those that have been heavy smokers. There are other conditions that can affect the bladder but I think the two that sound plausible in your case are a past UTI that wasn’t treated (not all UTIs need to be treated & a decision to treat is based upon symptoms and any other medical condition(s) the person has) and has caused inflammation so will take time to heal or might need some treatments or interstitial cystitis. There are self help measures that those with relatively mild symptoms can try. These are often all that is needed. Those with more troubling symptoms including pain, going to the toilet 20+ times during the day, 3+ times at night might need to have other medical treatments but again self help measures and physiotherapy is still very important.

PS keeping a pain and symptom diary daily for at least 4 weeks is very useful. Even on days you have no symptoms still write this down as a pattern might emerge

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Can you give me a few self help tips? I'm constantly drinking herbal tea, and find uva ursi the only two Things that eased the pain for me, but I still have this pressure feeling :(

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Yes that’s not a problem. I’m about to start work soon and won’t finish until

10pm but will post on my way home

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Hi Again!

Here are some ideas for self management of interstitial cystitis:

1) The interstitial cystitis diet. It basically aims to reduce or remove acidic foods. I’ve tried it myself and found a few that affected my symptoms so it’s unlikely all of them will be an issue for you. It might even be the case you can tolerate small amounts a few times a week. Here is a link to the diet from the ICA website

ichelp.org/living-with-ic/i...

2) Avoid wearing/reduce wear of nylon tights and anything tight around your pelvis as it can aggravate the feeling pressure/discomfort. I unfortunately have to wear tights for work as we have to wear skirts. On my days off I avoid wearing tights or I wear ones not made from nylon.

3) I myself use a hot water bottle or stick on heat patches which are available over the counter to help with the pain. Other people prefer to use something cold. It’s trial and error to see which one you prefer and helps you the most.

3) Try relaxation techniques

Use meditation tapes and/or visualization

4) Take a time-out for yourself, relax and rest as often as possible. A very important one for all chronic illnesses sufferers.

5) Get enough sleep! You will cope better if not sleep deprived.

6) Some people/doctors advocate those with urinary frequency as part of their IC should restrict liquids especially when traveling. I’ve never been a particular fan of this approach as I found it simply didn’t work and caused my pain to increase due to the concentrated urine.

7) I was told to take showers only by two urologists. But I was ok with that I as prefer showers anyway.

8) Treat signs of a UTI quickly. In most patients it’s ok to wait for the urine culture to come back from the lab to confirm an infection and treat with the correct antibiotics. If your symptoms are severe your doctor will prescribe antibiotics to start before the results. This isn’t ideal but one red flags would be kidney pain so they’d want to treat this quickly. If you have a lot of UTIs in a year you might be given an antibiotic to take at night long term. I was on this plan for 3 years and since I’ve stopped in the last 18 months I’ve had one UTI.

As be weary of negative dipstick results that doctors often use to help diagnose a UTI. 60% of my past infections didn’t show up on a dipstick despite symptoms and pain escalating very quickly. I often had to insist my sample be sent away where it always came back as positive.

I hope some of this helps and if I think of any more I will add to this list for you.

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Thank you so much!

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All of the above is very good advice. Don't sit for long periods. If you have too... make sure that you are standing up as often as possible. When you are home, sit on your side.. not directly on the nerve area. This is a big thing for me. I have also found that a bowel movement can trigger pain, well every day for me.. but likely not everyone. Make sure you have the bowel movement the moment you feel you need to. Do not let yourself get constipated. Prelief is something you can take before meals. Aloe Vera is something else you can take.. neither of these really helped me but I've talked to people that it does help a great deal. Do not lift much weight at all if possible while you have inflammation. My heating pad is my best friend. Again, water, water, water. Nothing inside the water, no additives to make it not taste like water. Just plain water, all the time. I have to drink at least 8 Dasani 16oz water, per day, or I will be in terrible pain.

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I have IC and other pelvic conditions. Don't drink herbal teas. Nothing but water for a while to see if the inflammation can ease off.

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Thank you! I wrote today to my urologist, tomorrow I have to call him, I'll update about it, but hopefully he's next step will be a cystoscopy!

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I do feel better now, no pain in my bladder only a slight discomfort feeling and pressure. The urologist said to take diclofenac twice daily , uva ursi and drink tea to ease the inflammation and if doesn't get better call him back.

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Hi it may be endo as dr suggested due to the nodule. Ureathesis pain in the ureatha which could be urethral syndrome may be your case as well.

A cystocopy could rule out other causes . Do not take anti biotics for no reason because they kill the good bacterias too

Goodluck

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Does clitoral pain counts as a symptom of IC/urethral syndrome? Right now this is my main complent and urethra pain

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When the bladder and ureatha is inflamed it could preasure the pudenal nerve causing clitorial pain.

Sometimes bc withdrawals and switching to others you may experience changes but that is not always the case

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The pain got back again :( it's been only 3 months but it's harder each day. How can you mentally cope with chronic pain?

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Sorry to hear that Edinamalac. I have frequent urination (sometimes I wake up every 50minutes in the nighttime - which means I don't get much sleep). I also have pressure in my bladder and feel like I have to go to the toilet even though only a little bit of urine comes out. I have been told that I don't need a cystoscopy - they checked my urine flow and gave me an ultrasound which didn't reveal anything.

I also have a lot of irritation in and around my vagina and have an inflamed and red ureatha.

What works:

*Not having hot baths/showers

*Wearing cotton underwear

*Using an emollient as a wash for my private parts

*using lubricant when having sex (Sylk is good from Amazon)

*using a cold compress or ice when I have pelvic pain

I regularly feel like I have a urine infection and when they send off my sample to the lab - it has been coming back as 'fine'. I don't always get burning when I have a urine infection but I am usually irritated in that area.

I also always have regular health screenings and have never had a STI.

I hope that you find an answer for your symptoms. Don't give up x

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Hi. It amazes me that with ongoing symptoms that you and others have that many doctors avoid recommending a cystoscopy. They almost always use ultrasound, along with the dip sticks and bloods, but it’s not the most effective tool as many diseases cannot be identified this way.

I find it curious why IC is the last thing for which the doctors will think to request exam and testing.

Anyway, I had my IC diagnosed in 2004 at age 53. For around 10 years I had been having many of the symptoms but I was treated for everything but IC.

I don’t know if it’s related or not but every since I was a child I’ve always had issue with my bladder being irritated and not holding enough .. annoyingly many stops on every trip we took.

In 2003 after a six hour flight I had a extreme amount of pain in my lower abdomen and began having clumps of blood pouring out whilst having a shower to relax. At first I thought maybe my menses had returned but I had already gone through menopause and it wasn’t coming from the usual route. So that prompted my return to the urologist.

At the time I was finally diagnosed because I had already gone through the other possibilities over the years this time the nurse practitioner in my urologists office recommended to him that I should be given the Potassium Sensitivity test. This required instillation of the potassium solution into the bladder which was quite painful. The reaction indicated that I had IC and the pain was short lived as the urologist immediately countered that by adding another solution that stopped the pain. The IC, in my case was described as the wall of my bladder (GAG layer) looking like a cheese grater. Finally, I had the answer. I was given Elmiron pills and given weekly bladder instillations of a solution that calms the pain and burn of IC. The current solution they use for me is Cystistat. I also underwent biofeedback training for strengthening the pelvic floor to help control urinary leaks because that was a situation for me. This was quite helpful too. These bladder instillations eventually were slowed to once a month and I have been allowed to continue them indefinitely as I still get relief and my urologist and I feel it’s better than undergoing bladder surgery.

If you think you might have IC the PS test is a way to diagnose it that ultrasound etc doesn’t show.

Times have changed somewhat since I was diagnosed and many docs don’t want to do the potassium test but it’s still a valuable diagnostic tool.

I hope some of this helps and ask about the Potassium Sensitivity test. Don’t fear the pain so much as it really goes away quickly with the flushing solution. Good luck.

Here is a link to some info from an IC organisation.

ichelp.org/diagnosis-treatm...

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Not pelvic inflammatory disease?

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I could have that, one private gyno told me that my uterus is contracted due to inflammation. She suspects IC , I'm waiting for my cystoscopy, but she told me that I previously had PID, it just got misdiagnosed. Right know I have BV, getting treatment for that and my only complaint is pain and pressure in the urethra.

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Well let me know please

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Are these symptoms constant or sporadic? Do you find they're triggered by anything in particular? For one, IC symptoms can lessen over time on the IC diet, but only after months of sticking to it. This sounds like days with different symptoms. To me, it sounds like pelvic floor dysfunction, and I've never heard of IC causing inflammation with the vagina. I'm not an expert obviously, but to solve my own issues involving a sense of urgency one day, and hardly needing to go to the bathroom more than 2 or 3 times a day the next, I can safely rule out IC. It's not that erratic with symptoms, and once you have symptoms they never increase typically or decrease unless the diet works for you and you have followed it for months.

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I don't have urgency right now or frequency, I only have pain and I can't tell you exactly where I feel it and my symptoms differ daily. Right now I have really bad pain and bad smelling urine that has sometimes weird white stuff in it. My vaginal and clitoral pain was caused by the antibiotics , I have bv I'm getting oral metronidazole for that. But I do feel something isn't right in my urethra , don't feel it in my bladder that much. I have to take indometacin suppositories to go through the day, but it has effected me both physically and mentally. I got another urine analysis which was negative, waiting again for bacteria and fungus culture and on October. 2 I'll have my cystoscopy. I was thinking about pelvic floor dysfunction as well or something going on with my urine system , I've been to 7 different gyno they can't find anything on UH. Even when I said that I feel burning pain in my vagina , because I wasn't inflamed no one thought about BV, I had to go to an STD specialist that took a swab and gardenella DNA which was positive. Plus today I in the morning I felt pain around my kidney area. But you are right it does differ daily , but the pain always comes back it is better than it was a month ago, It isn't affecting my bladder this time.

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The cystoscopy revealed yeast in the trigonum area. The doctor put me on fluconazole for a month and I'm trying the candida diet, though I'm not sure if candida can cause this much pain or if I can get rid of it.

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