Interstitial Cystitis or Endometriosis?

I am interested to know if anyone who suffers from Interstitial Cystitis also has Endometriosis, or if anyone has been misdiagnosed with having one, but actually has the other disease.ย 

I know that both diseases have some of the same symptoms such as pelvic pain, urinary frequency, increase in pelvic pain nearing and during the menstrual cycle.ย 

Click here to read about a study that was done called “The Evil Twins Syndrome”.

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Comments

  1. Yes I have great experience with being misdiognesd with the endometrious…..i need to learn how to spell or lay off the wine…LOL….I had this for over 10 years…constant pain, pain when having sex, pain walking, pain during my cycle…I had 10 doctors put me on the pill for over a period of 10 years until a dr listened to me and gave me a hystorectomy….The pill reacts differently to everyone and for me it makes me loose weight…and loose it fast…I will shrivel up to nothing….My new dr (to which I love)did a hystorectomy last august and it was the best thing ever….He said I was a classic case and when he cut me open…boy did he believe he did the right thing….I had a hug purple bubble gleeming back at him….he said my left ovary was demolished with endo…..It was the best thing I’ve ever done….
    Talk with your doctor and be specific on your pain….talk candid with him/her….I know I ddi this for over 10 years and finally found a dr. who would listen…I hope it does not take you that long….good luck…PS…Google endometriosis…copy and take with you…..

  2. Oh yeah…my uterous was filled with endo too…..

  3. Free@last – Wow! Your symptoms sound exactly like mine! I have had pain when walking, could not have sex for quite a while because of the pain and extreme pain during menses. I have been doing better now, but when it first began it was horrible. Is there any way they can find endo. through pap tests?

  4. Yes, I have endo and IC and pelvic floor dysfunction. Seems like when it rains it poors. I’ve been in pain for over 3 years STRAIGHT. I dont know who said that it seems to get better the longer you have the disease. Instead it went from pain before my period and before/during/after sex to ALL the time. I’m starting to wonder if there is a link between dioxin or other toxins and endo/IC. I was never sick EVER (I literally got over mono in a week in high school I was so healthy) and after joining the military w/in 6 months of being @ the station I am at I was in pain and its only gotten worse.The only way to confirm endo is through a laporoscopy ( i think the spelling might be wrong, i suck @ spelling). I had two laps before they could confirm my endo ans after 6 months of HELL on Lupron I was still in pain.

  5. i have all those, had a hysterectomy, but still have the ic symptoms. i also have fibromyalgia and so am going to go to a dr that specializes in treating all these, as they are all part of a syndrome. i wish I’d known 14 years ago that they were related, I would have gotten treatment and been much happier.

  6. Hi Catcell, Thanks for posting. Wow – you have been through a lot. Has your IC gotten any better with time or are your symptoms still the same?

  7. Cari Olson says:

    Thank you so much, I just found this site this evening. Now I know that I am not going crazy. I have both Endometrious and Interstitial Cystititus. I have been suffering with this for so many years. I am just wondering if there are any other treatments besides the bladder installations or the Elmeron? I am currently doing the installations and it is not working well at all.

    Thank you again

  8. Hi Cari, There are other treatments for IC Disease. You can have an outpatient surgery where the doctor will stretch your bladder. This can give relief temporarily. Click on Interstitial Cystitis in the categories on here and you will find all kinds of info on IC Disease.

    • Hi I’m Carmen and live in Northwest Arkansas. The instillations and Elmiron aren’t working. I live with my heating pad! I follow the diet and eat none of the foods your not supposed to eat. I’m in PAIN! I need help. I have pain mess that I have just been saving. I’ve just about had it! What does a pain management clinic do for you? I’m afraid they won’t even know about this horrible disease that there is no cure for. Will they know that it’s comparable to living with cancer? How will I make them understand?

  9. I have had endo for about 4 years now. Lupron made me go crazy and now my doc wants to do a full hysterectomy. I am only 31….. My dr just decided last week that I may have IC as well. Going to a urologist. Maybe I will finally get some help. Anyone else feeling lost in a sea of drs and no relief in sight?

  10. Have had cronic pelvic pain for 35 years. Over the years have had surgeries for ovarian cysts & endo. Then complete hysterectomy.I am also a DES daughter. Just thought i would have to live with this pain for the rest of my life. Did natural child birth for 3 live births. Used that knowledge to push the pain down. Did not take pain meds for pain. Several years ago started have uti’s too frequently. Went to urologist and was told ok but if probelm becomes worse go to gyno. So when probelm worsened went to gyno dr she diagnosed as ic with pelvic pain and pelvic floor problems. Am with a pt that specializes in pelvic pain, ic, etc. PT has taken daily pain away by 50 to 75%. My miracle. My PT said she cannot take away my scar tissue or endo tissue but definately will help with connective tissue probelm. AGAIN MY MIRACLE.

  11. I have had chronic pelvic pain for 4 years now. I was diagnosed with endometriosis and I have done everything from having Lupron shots, medications, surgeries, etc. I had an appendectomy and laparascopy 5 months ago and it didn’t relieve any of my pain in fact I am in more pain! Just yesterday my urologist told me I have interstitial cystitis and I don’t even know where to begin. I am only 24 years old and I dont know why I am going through all of this. I have severe pain to the point I can not move sometimes. The doctors have tried everything want me to go to a pain management doctor but I feel hopeless! Does anyone have any suggestions? I also had a cystoscopy as well and I am about to start the elmiron

    • Jamie, I was diagnosed with interstitial cystits three years ago (at 23), though I have had severe pelvic pain since about 20. The IC treatments have generally had little success for me, including the Interstim implant which I still have (it worked well for about 6 months and then started to wear off, and the surgeries were not fun). I have a pain management doctor now who is wonderful, and honestly working with him has been more helpful than my IC specialist by far. Recently my pelvic pain has gotten MUCH worse and following an ER visit this week I am going to a new urogynecologist/pelvic surgeon tomorrow morning to evaluate for suspected endometriosis on top of the IC… and my wedding is in one week. I am 26, with a 5 yr old daughter and about to get married and gain another 5 yr old (stepdaughter), and I am in constant severe pain. Needless to say I am a mess. It’s so hard to be in this kind of pain, and in your mid-20s on top of it. Please don’t hesitate to contact me if you need support. I know I do! Erin

  12. Man reading all these post I can not belive the stories from compared to when I was first diagnosed almost 16 years ago! From the very first day I started what is normal called your period it has been problem for me. Back then either you were looked at like your crazy or told to get pregnant it will make it better. After my first born, I felt like a real woman with a normal body, but as the years passed it slowly came back. But back then you just tuffed it out no one would listen to me! BIG mistake, Now I have ulerative colitis, (UC) and Interstitial Cystitis (IC) and some weird inflammation disease on the skin on my hands. All of these are some form of inflammtion due to my immune system.I think its because my endo went so long untreated but I cant get no real answers. Now something about my muscles and nerves in my abdominal region, wth. Anyone else have muscle or nerve damage in their abdominal cavity and what is this all about! My dr is good he did the paper and research on the evil twin, (endo and IC) but he says one thing at a time!! Well im up to 13 pills a day and two treatments a week and 2 skin creams three times a day!! How many more things can there be? I am just want to know what the main casue is and to get ride ot it so I can have my life back!

  13. amanda melton says:

    yeah i got both. one site said that other illnessed, diseases and disorders follow endometriosis. it was on a website i read about if i find it again i’ll post it on here.

  14. I was just recently diagnosed with endometriosis and interstitial cystitis, and I also have Irritable Bowel Syndrome and have had periodic ovarian cysts since they put me on BC at age 11 for pain management. After 10 years of pain, I finally found a doctor who listened and directed me to a Pelvic Pain specialist. I am currently recovering from my first laproscopy. An excellent solution for me has been a pre-sacral neurectomy. The way my doctor explained this, is basically that this bundle of nerves that sits behind the uterus has no function whatsoever except to communicate uterine pain. She told me that resecting the endo might have little to no effect on my pain levels, but cutting out this nerve bundle would absolutely give at least a 50% reduction in my pain. I’m lucky enough to have an outstanding surgeon who could suggest this procedure. Even if I only get the 50% pain reduction, its going to be a huge improvement to my quality of life! She also put me on a BC to only have my period 4 times a year. Hysterectomy isn’t an option since I’m only 21.

    I was diagnosed with IBS at age 16 (which I’ve since been told is another “evil twin” of the endo and since they found endo near and on my bowel, we’re pretty sure that the endo was the root cause of it). I’ve managed it for the past 5 years with dietary changes (such as becoming vegetarian) and so far it seems that this is the best option for managing my IC. Luckily, the second urologist I saw happened to be very familiar with endo and was able to correctly diagnose IC.

  15. I had my daughter at 17 years old, and shortly afterwards began having chronic pelvic pain, cramping, unexplained weight gain, excessive chronic fatigue, terribly painful menstrual cycles, pain with intercourse and during bowel movements and urination, frequent urination, etc. I saw Dr after Dr and they could not figure out what was wrong with me. I was put on the Depo shot to try to help with the cramping and heavy menstrual bleeding, but it did nothing.
    Last June I was referred to a gastrointerologist who found that I had an inguinal hernia, so had that laproscopically repaired…the pain and all the other symptoms were still there after the surgery, so I was referred to a urogynecologist…she diagnosed me with having complex ovarian cysts and endometriosis, and because of the severity, I was in surgery the following morning…after this surgery I was still hurting terribly, so they looked further and diagnosed me with having interstitial cystitis as well as reoccuring endometriosis…hysterectomy is off the table at this point in time because I’m only 21. None of the treatments that they have done have helped at all, and I’m getting discouraged. Any ideas or suggestions?

    • Hi Rachel, I’m not a doctor so I’m not sure I can help but I can tell you what I have the treatments that helped my Interstitial Cystitis. The medication Elmiron worked for me; going in for outpatient surgery, being put to sleep and having my bladder stretched helped; and making a tea out of marshmallow root also helped my symptoms a lot. I would suggest that you get on the Internet, get out the yellow pages, and start searching for a urologist who sees a lot of Interstitial Cystitis patients. Use my Contact Form if you need someone to talk to. I’m a great listener! ๐Ÿ™‚

  16. sarah Rose says:

    Chamomile tea helps me with my ic for everything from discomfort to extream pain, so does drinking a half tsp of baking soda in a large glass of water if i am geting a lot of acute blader pain.
    the ic diet sujestions help me a lot if i am having an acute ic flair.
    the mirena is great for my endo.
    There is a homeopathic called Bellis 200 (200 is the strength) this is the only thing other than 2000 miligrams (enouggh to hurt kidneys) of naprogesic helpt my extream pain at the begining of period.
    Friend of mine has good results from antiinflamitory esential oils.
    my health still gets in the way of my life all the time, it is depresing, ow year i take citalowpram and this helps me manige my chronic pain and not feel as bothered by it. it still sucks though. Good luck all.

  17. sarah Rose says:

    My gyne has me on alovera juice to 20 mls a day, 40 mls inicialy for a month.

  18. Ann Calhoun says:

    My niece is 27 and has been in severe pelvic pain since age 16. We are at wit’s end due to multiple problems/doctors with no clue! Our family is full of MDs and PhDs and still can not get answers to multiple problems. She has had a hysterectomy (24) for severe endometriosis and cannot function due to continued IC intractable pain and urgency. She also has aortic dilitation, pelvic congestion syndrome,is possibly Marfans, and comes from a family full of Crohn’s Disease sufferers. All these suggest an underlying connective tissue/autoimmune disease connection. Anybody know of a research/treatment facility who can help us? My niece and her father are close to being suicidal over the repeated unsuccessful attempts from unbelieving doctors who only look at their own organ/system of expertise!

  19. i had my son at 18 years old. my pelvic pain all started around the age of 13. i was diagnosed with reoccuring ovarian cysts, endometriosis and IC. i know how you all feel with having soo much pain and NOTHING seems to help! i have had 3 laps done and at first i thought to myself, awesome this is gonna make it soo much better, but it hasnt! it seems to have gotten WAY worse in the past few years. i was put on the lupron, which made things way worse, i tried the mirena, it worked for a little bit, but then things got bad again! ive tried pretty much every birth control pill out there and they made things worse also. im on elmiron for the ic and constantly seem to be going to the emergency room doubled over in pain so bad to the point where i feel i cant even control my own life…my pain controls my life! im now on the depo shot, due to the doctor said birth control usually helps, ive been on it for a little over two months now,and have had my period constantly since getting the shot and my pain seems to be getting worse and worse as the days goes by. im tired of going to the emergency room to get some pain relief, due to i HATE pain meds…im hate being prescribed pain meds cuz i dont want to live my life relying on narcotics..im 21 years old and my doctor has mentioned giving me another laparoscopy and possibly doing a hysterectomy on me if thats what i really want done due to the pain is overbearing. but i cant even get my insurance to cover for me to have the laparoscopy done. they keep denying me. not sure why, because ive done all the pain management they want me to do and everything theyve asked, ive tried. but does anyone have any suggestions on something else i can try? i just feel like the pain is taking over my life and i want help! thanks everyone! and i hope you all get help with your pain also! its not a way to have to live your life! praying for you all!

  20. Melissa says:

    i’ve been on treatment with lupron (hell!) for endometriosis for the last 5 months, no relief, now the dr wants to put me through tests for IC even though i’ve never had a bladder infection and the only same symptom between the 2 is pelvic pain. I am trying to read up and these two, I think its a waste of time personally for me to continue with IC testing/treatments and ibruprofin isn’t doing a damn thing for the pain. I personally want to just have the laproscopy done to see whats going on and get it fixed asap.

  21. If you haven’t had blood work to test your ANA, get it done. Mine is 2650 and 160 is normal. I have acid reflux (endoscopy showed nothing abnormal), IBS, IC, and endometriosis. I also had swelling in my joints and pain all over. Somehow this is all connected. I am going to a rheumatologist in 7 days to find out what is wrong with me. Don’t think it is coincidence!

  22. I have both……. IBS and vulvavestibulitis.
    Would be interested in any type of study.

  23. My name is Julia and I just turned 24 I am suffering from severe Endometriosis, IC, IBS, chronic pelvic pain, Fibromyalgia, pelvic floor muscle syndrome, acid reflux, and still being tested for more conditions. I have struggled to live a normal pain free life. I have undergone laparoscopy for endo and lesions are still present and growing back. Doctors have told me I’m too young for all of this while not showing true sympathy. I know have classic sciatica, bone stenosis, and herniated disks which is the cherry on top! There is a tremendous lack of awareness and knowledge of these woman dominating diseases. Very few people will feel compassion as they don’t understand the severity. I have been put on Lupron depo which I’m getting off! I highly do not recommend it unless you want to feel even more depressed and worsening mood swings also heat flashes as though your going through menopause. I’m on el miron for ic which I have not noticed a difference. I feel helpless hopeless and depressed with no cure for my diseases or sympathy from anyone unless they have similar diseases. Something needs to be done to spread the word of these not only physically dibilitating diseases but emotionally stressful causes. I feel like what I’m going through is no big deal to family even doctors, this is a big deal as there is no cure and I will live this way the rest of my life, the longer you have endo the worse it gets! Not only that the treatments, docs visits, surgeries, etc.. Are extremely expensive:( I’m lost and losing my mind, while my friends are in college and partying or on vacation, I’m lieing in bed crying with severe pain! As women with these similar diseases there has to be something we can do!! I’m sure I’m not alone in this endless tiring battle๐Ÿ˜ข

  24. lora conrad says:

    I have had Iterstitial Cystitis for about 7 years and it keeps getting worse, I have tried about everything there is I am on Elmiron and have tried streaching the bladder had this done twice, Can’t find any relief.Am up for any kind of relief, Sorry to hear there is a lot of people suffering from this ,and no cure in site. I get a infection about once a month .Thanks for this web site.

  25. I have been suffering with endometrios since I was 19 yrs old. Very painful periods,heavy bleeding doubled over in pain to the point of passing out…Dr’s overlooked it 4 many yrs until I was 35 & trying 2 get pregnant. I found this wonderful infertility dr in my area who diagnosed me with stage 2 endometrios. Had laproscopy/hysteriscpy to remove ot was around my bladder & bowel as well. 3 1/2 yrs of inferiltity treatments with no results. MY tubes were totally scarred from endometrios. Now 7 yrs later had severe pelvic pain wish brought me 2 the ER several times. WEnt back 2 infertility dr who also specializes in endometrios . Had another laproscopy/hysterscopy. Had stage 4 endometrios this time. All over my reproductive organs plus my bladder & my bowel again. As a result of how bad the endometrios was I also developed Interestital Cystitis. So i now have the “evil Twin “. i live everyday on muscles relaxers & or pain killers to get thru the day. I have started baldder Instillation treatments w a urogyn which is a treatment 2 help manage my IC symptoms cause as we all no there is no cure 4 either 1 of these disorders. I am only 41 yrs old & feel like my life is over. I try each & everyday 2 wake up & look on the bright side of life i have my good days my so so days my bad days & my horrible days where i cant even get out of the bed. Thank god i have a loving caring & understanding husabnd & a 14 yr old stepson that are my world. I know I could not be able to get thru all this w/o them in my life. My husband is my rock.

  26. I have been diagnosed with reoccurring ovarian cysts (one of which burst and hemorrhaged causing me to go into traumatic shock and nearly died spending 3 days in the hospital) IBS, IC and now I am certain I have endo. The IC is still there but just around 5%…I take D-Mannose every day, my urologist recommended it as a last ditch effort before pharmaceuticals…it took months of taking it 3-4 times per day, 3 capsules at a time and every hour or 2 during a flare up…now my flare ups are so minor and I can drink coffee and wine and have sex without pain or with very minimal pain. When my IC was bad I was in bed all the time in horrible pain. I am always battling IBS now and have a lot of pain with ovulation every month which is the cysts and I fear endo as I have some symptoms of that. I am looking to cut out dairy and gluten as I have seen some links. I highly recommend D-Mannose and give it time. I don’t know what it does but my sisters also have IC and they have normal lives now.

  27. Hi, I was diagnosed with Endometriosis at around 40 which I understand is late in life. I had 3 laproscopies done and the doctors cauterized many sites which helped somewhat. I was working at the time and spent much time pacing around my office and throwing up in the bathroom. Luckily I hit menopause at around 50 and the symptoms have disappeared. I could not find anything to help much. . .

  28. I have endometriosis and the doctor said sounds like I have IC , he told me to look it up. I did and found this site. It seems like I have all the symptoms. He wants to do a parcial hysterectomy. He wanted to do a full one but I also have a brain tumor and a blood clotting problem so if he takes it all it can cause fluctuation in my hormones that can be life threatening. It sounds like some of you have had the hysterectomy and still suffer. I don’t understand the doctor seems to think the two are related and this will solve everything. Seems like he is wrong. Glad I read your stories before I made my decision.

    Thank you,
    Kim

  29. Brittany says:

    I am at my wits end! I had surgery last March(2012) for endometriosis and cyst removal. In June I had a hydrodistention with cystoscopy for IC. Did it again in December. Saw a physical therapist who said, “Oh hey you have an inguinal hernia.” So I found a hernia specialist in ATL, had it repaired this March(2013), and I am having my 2nd left side hernia repaired this Friday. I have been in pain since I was 18 after having my son. Sex is excruciating. My gynecologist didn’t believe me and told me repeatedly, “You just have painful periods.” or “You have a UTI” even though my cultures came back back fine. I switched to another gynecologist who said immediately I had endometriosis and did the lap, but I still didn’t feel 100%, so she sent me to the urologist who did the 2bladder procedures. I had such high hopes for the hernia repair, but my right side hurts SO BAD. My pain during sex is all on the right side. I wonder, is my endometriosis back? I was never diagnosed with a specific “stage”. Is my IC just THAT bad? Is there another cyst? I had an ultrasound and CT done last October, nothing was there, so my gynecologist sent me on my way with no answers. I’m debating looking for an endometriosis specialist, or some other kind of specialist who would have knowledge on these conditions. I’m 24.. I shouldn’t have these issues! I’m not sure what to do from here? I don’t know who to see anymore ๐Ÿ™

    • Traci Thomason says:

      I was first diagnosed with endometriosis and IBS when I was 22. I just had my 4th laparoscopy and had Dr. Hugo Ribot (in Cartersville) my surgeon. He’s also diagnosed me with IC. I’ve been going to pain management for several years now and I see Dr. Brownlow in Newnan, GA. Dr. Ribot is apprehensive about prescribing anything for frequency and urgency because it is contraindicated with the narcotics I take to make my pain levels manageable. He suggested I start taking Elmiron, but it takes 4-6 months to start seeing any relief. My life has definitely been altered a lot between the level of pain and the amount of trips I make to the bathroom everyday. Just wanted to share and let you know you aren’t alone. I greatly appreciate these forums where we can share our stories with other patients that understand. Also, any time you have a laparoscopy it’s extremely important to make sure that the doctor excises the endometriosis. Best of luck to you and since you are in Atlanta I wanted to share my doctor’s names with you. They are both amazing. I’ve been dealing with these health problems for 12 years now. Hoping to find some relief for the IC as it’s really embarrassing to pee over 20 times a day.

      • I worked for a General surgeon for 17 yrs and you need to know that every time you are having surgery it causes adhesions! Which also can be very painful and may mimic endometriosis .

    • Hi there – I just wanted to add that I also have both endo and IC . Then some years ago I was also diagnosed with hypermobility syndrome. I think that they all go together as a connective tissue disease really. I have pelvic and back pain constantly
      I had a full hysterectomy at age 40 – went straight into menopause and had spine damage after surgery. I am now 64 and still struggling as GP’s dont really link the whole together. I do get intravesical cystistat 6 wekly which helps the IC and after having another flare up amd going to see another consultant who specialises in endo. I just wish that there was some more research into the whole problem and I wonder if genetic therapy of some kind would stop it passing down the family

  30. I was diagnosed with IC in mid-1980’s, when in fact I actually had endometriosis which was diagnosed in early 2012. A 30 year misdiagnosis! I believe OB-GYN’s need to be better educated in the symptoms of endometriosis. I lost track of the number of doctors I saw trying to discover the cause of my pain, which felt like barbed wire sticking into my pelvic area, namely in the area of the bladder and lower intestine. That I was able to conceive a child only convinced the doctors that endometriosis was not my problem. I finally feel better than I have since my late teens, and I am in my 50’s.

  31. jasma Jones says:

    I have both and have been dealing with them for about 15 years now and I’m only 26 years old. Waiting to be released from the hospital right now from a surgery I had that had left me in the hospital for a week. If anyone has any questions feel free to email me. I will do my best to answer anything you would like to know. ๐Ÿ˜ƒ

  32. Mikhael says:

    Ann,
    Dr. Larissa Rodriguez (in Beverly Hills) is excellent. Whoever you see, SEE A SPECIALIST instead of wasting time with doctors who think it’s in your head. (After 15 years of dealing with this, I found her name in the top 12 IC doctors on the IC network website. I live out-of-state but was so impressed with her credentials and knowledge at our first appointment last week that I am having a cystoscopy to remove Hunner’s ulcers July 24).

    I first had symptoms of IC/pelvic pain in 1998 at age 20, had a LEEP for precancerous changes on a pap a year later, and then the IC got so bad (nocturia 40 X night, burning, frequent bladder infections) that I thought I would die. I did the IC diet, all the drug therapies (Elmiron, Elavil, Oxytrol, Vesicare, Rapaflow, etc.) for several years without any relief. I had Interstim in 2001 but it did not work (original surgeon in Alaska put it in upside down and backwards so it shocked me horribly; I went to the top doctor at Mayo in Jacksonville and he took it out and put it in properly but it still failed to work). I was on a daily dose of Macrobid (to prevent bladder infections) for a few years.

    Nothing worked. Frustrated and in pain, I saw doctor after doctor and no one had any ideas. I was on and off sleeping pills for several years (to minimize nocturia) and then went into a semi-remission around 2008 (nocturia 5-10 x night which is great for me compared to what it had been). This lasted until December 2014, when I ended up in the ER for a horrible bladder infection that did not respond to two full courses of antibiotics. I have been in an IC flare since then. My NJ doctor did a cystoscopy in May and found the Hunner’s ulcers but for some reason did not remove them necessitating the upcoming surgery with Dr. Rodriguez. I have never been in such constant pain and it is ruining my life.

    Dr. Rodriguez gave me hope-something no other doctor has been able to give me in over 15 years! Removing the ulcers is the first step (hopefully it will stop this terrible flare), then physical therapy for pelvic floor dysfunction/pain management, then Botox, then Interstim (technology has improved since I originally had it done in 2001), then bladder transplant. I am currently on Myrbetriq, Elmiron, Singulair, Pryidium, and Nortriptylin. Although my case is severe, she is hopeful that some of these treatment options will work; if not, bladder transplant is the last result.

    I also have a complex ovarian cyst on my right ovary (have had it since 2010), possible endometriosis (haven’t seen a specialist for that but my NJ urologist saw something suspect on the cystoscopy), PFD, urethra infection (have been on 6 different antibiotics since December and think the last one might have gotten rid of it), and two herniated discs.

    Sorry for the long email, but I have been up for 30 hours (flare is so bad that I get up to pee every 10 minutes despute a sleeping pill and Oxycodeone) and am in pain. To those who are suffering, you are NOT crazy, and if your doctor won’t listen, find a specialist who will! I self-referred myself to the top doctors at Mayo and also at UCLA (Dr. Rodriguez). IC is so complicated and not well-known that you need to see someone who specializes in the disease. Also, there is a great book, “The Proactive Patient” about IC and bladder/bowl-related diseases. Good luck. I know how horrible it is to live with this.

  33. I was diagnosed with ic last month after cystoscopy I’m taking elmiron and elavil a feel some relieved but before and during my period I have very painful cramps my doctor said that I don’t have endom because my ultrasound was normal I had laparascopy 3years ago it was normal how make sure that I don’t have endo

  34. Who is your dr is he in JAX FL? I have fibromyalgia, ic had a complete hysterectomy because the pain from my ic was so bad we thought that’s what was making the endometriosis so bad. I also have a ruptured disc that’s also torn and the nerves of my heart run through it so it can’t be repaired. It’s caused me to have a MI recently. A silent heart attack. I’m in horrible pain and my dr doesn’t write pain medication. My neurologist had a stroke so I can’t even get the medication I was getting. I’m just suffering. I am basically bedbound or couchbound. My quality of like has decreased 10x what it was before I had my breast removed and my reconstruction. I had a fall that tore a ligament in my shoulder and they aren’t treating it either. My pain is excruciating! I need a new dr!!! Can you tell me Drs name please??? I need a new dr.

  35. FantasticUnicorn4004 says:

    Hi all, I have been suffering with both endometriosis and interstitial cystitis for about 7 years now (and realistically probably since starting menstruation began at age 12). I am now 29 and on Lupron Depot (insurance requirement before hysterectomy) and it has made my bladder pain worse (IC) and only slightly decreased my Uterine pain. in addition it has caused horrible side effects. Has anyone had a Hysterectomy with IC? What happened after? IC Pain worse? Better? No change? I am desperate for some relief. Thanks in advance

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