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Avatar universal

Suspected Endometriosis - does anybody experience Urinary symptoms?

Hi all.

I am a 22 year old who has been struggling with gynecological/bowel/urinary problems for a few years now.

My health has become increasingly worse in the past year. Mainly, I have had bowel issues and chronic urinary tract infections (a mixture of diagnosed UTI's and constantly feeling like I have a UTI when no bacteria shows up in lab testing). I have visited several specialists including a Gastroenterologist and Urologist. I have been tested for coaliac disease (runs in my family) , chrons disease etc. all negative. For my chronic UTI's, the Urologist put me on 6 months of prophylaxis Macrodantin antibiotics (100mg a day) and my UTI symptoms have gotten better BUT I still experience burning pains when urinating, lower abdomen pain, terrible bloating to the point where I genuinely look pregnant and stabbing pains up my vagina and anus.

Sick of having no answers I visited a sexual health clinic and was referred to a Gynecologist specializing in Endometriosis. I had an internal ultrasound done and they found a 5cm hemorrhagic cyst on my right ovary. The Gynecologist suspects this is cyst is an endometrioma. Due to all of my other symptoms the Gynecologist suspects I have Endometriosis. I am booked in for a disagnostic Laparoscopy in a months time. As well as a Laparoscopy I am having a Cystoscopy and Hysteroscopy to check everything out - as well as Mirena IUD insertation for my heavy bleeding and abnormal periods.

After all that background information - I am wondering - do any of you Endo sufferers experience Urinary tract infections / Urinary problems as well - burning when peeing, lower abdomen pain etc. ?

Thank you !
10 Responses
136956 tn?1425609872
Welcome to the Endometriosis forum ;)

If you want to look at my profile I have a lot of information there as well as a link to my blog.

As for the uti I never had one in my life but it always came back with higher than normal white cells, lots of white pus but no infection once cultured. I have had all the symptoms and than some. The cystoscopy will be able to tell if you have IC so that is good that they are doing it at least to rule that out. I have all the symptoms of IC but urologist said I don't but three Endo specialist as well as the IC network said I did.

It is possible that scar tissue or Endo is on the bladder causing you problems.

The way you have posted makes me think you have a reputable surgeon but I want to check for you as there are only a handful of surgeons world wide for 179 million women that can effectively treat and excise the Endo out with minimal laser as well as getting it off all the organs. Some don't have the skill.

You have a 5cm blood file cyst which indicated severe to moderate disease so you want the best of the best to operate please remember this it is crutial.

It sounds like it's possible you have rectovaginal Endo like I did as per the sharp rectal pain (my journals have some info) this is one of the hardest surgeries to do and depending on how big nodule might be there you could potentially have to have a bowel resection. You can't leave it there or any Endo or it will grow back.

There Is no cute for Endo but a good excision surgeon plus good diet and a plan to suppress your periods after surgery is vital. I was on marvelon for 8 yrs continuously so I got no period just breakthrough bleeding every 3-4 months then the last two years nothin at all. No period or ovulation equals no pain if the Endo is properly excised.

Please let me help you to double check your surgeons name and if it isn't a reputable one I can guide you to the best.

Best advice I can give is "make the first surgery count" if not you could do up with some serious problems such as damaged, repeated surgeries over and over again. I know someone who has had 22 before they were 26 so please take what I have to say seriously. This is your body no one else's and you want it done right the first time.

Avatar universal
Thanks very much for all the info. You are very helpful. This whole thing is new to me, but I am happy I have some kind of answer after being in pain for so long.

I have been researching IC for years and think there is a high possibility that I have it, but my Urologist refused to do a cystoscopy and just put me on 6 months of constant antibiotics, which I was not happy about to say the least. I am happy my Gyno has listened to me and is doing a cystoscopy at the same time as the Laparoscopy. It will be interesting to see if they find anything.

I am in Australia and my surgeon is reputable the best in my state so I am sure he will remove all the endo he can see - fingers crossed.

The sharp rectal pain is only recent - the sharp vaginal pain is more of a concern to me ( random shooting pains that are very quick and feel like somebody is stabbing me with a knife up my vagina)  
Do you have these pains or know if these are common endo pains?

I too was on Marvelon but it made my migraines so bad that I had to get off it. I've since been on Microlut (a progesterone only mini pill) and it has caused a lot of bleeding but my migraines have got a lot better. Doctors have said I cannot go on any birth control that containes estrogen. So progesterone only birth control are the only options for me - mini pill, IUD, depo shot etc. I have read horror stories about the Mirena and am really scared about getting it. I am going overseas 4 weeks after my laparoscopy and will be devestated if I am bleeding / in pain etc. from the Mirena! I just want to go overseas and have a good time.

My fear is that I will have to go through this Laparoscopy and they won't find any Endo/IC etc. - that sounds strange but I am over having no answers. I have been to a total of 7 specialists in 12 months and had so many tests/scan done, in between countless (almost weekly) doctors visits. It is taxing -emotionally and financially, to sum it up I am sick of being sick. So as horrible as an Endo diagnosis would be it would be an answer for me.  
1926359 tn?1331591739
Hey There-

Your journey sounds similar to mine, although I have BOTH endo and crohn's and IC.  My endo specialist believes my Stage 4 endo left undiagnosed for 12 years contributed to the other two.
I understand your suffering and would urge you to follow Ticked's advice on finding the proper surgeon to do your excision.  I had 3.5 years of symptom free life before it returned.  I am going in for excision surgery again this summer.
Keep posting and know that you are not alone.
Lu
Avatar universal
Hi, right now as I write I am a patient at Royal women's hospital in Sydney for pain management due to severe chronic endometriosis. I'm really unwell so I will get straight to the point.

I had symptoms from 14 (after my 1st three menstrual periods). It took 11 yrs to be diagnosed.( I am now 37)

Yes I too get sharp pains up my vagina (like a spear). They have found each surgery endometriosis on my bladder, ureters, vagina, peritoneum as well as uterus, ovaries etc.

I did have rectal pain from 14 to 25 where it was found on my bowel. It has not grown back there since it was removed.

It's really terrible and scary when you know there's something wrong and no doctor that you see thinks there's anything wrong. The pain up the vagina and rectum is out of this world. Plus the rest of the pain.

I'm so glad you've found someone, well I hope you have.

After being told for 11yrs that there was nothing wrong and I finally saw a gynaecologist and was booked in for surgery. I was absolutely terrified that when I woke up she would be wild with me for wasting her time, because nothing was wrong with me. But that wasn't the truth, she was there telling me it was everywhere and that she could not remove it all in one go.

So please just let yourself know, you are right, what your body is telling you- this isn't right/normal. Pain is a signal that something is wrong. If you would like to keep in touch you are welcome. It will help me get through this dark time.  
136956 tn?1425609872
You are correct, the longer it takes to diagnose the more damage can be done to everything like your bowel and bladder as well as Pelvic Floor dysfunction and Neuropathic Pain syndrome.
136956 tn?1425609872
I did have both those sharp rectal and vaginal pain but I also had rectovaginal endo twice. It is a possibility that you do have bowel involvement which also can cause the vaginal pain. You can also have vaginal Endo but you will pretty much find out when you wake up. Most surgeons don't know how to remove rectovaginal Endo and some don't even know where to look. An expert can tell.
136956 tn?1425609872
Also I was going to add that I pushed for excision surgery for 4 yrs after my first one. The top specialist said it was all in my head and wouldn't listen. He sent me to a pain clinic for Neuropathic pain syndrome.During this time I was peeing 60x day and using enemas 3 days a week. Finally after 3 different meds in a year she finally booked me but I had anxiety because she wasn't an endo specialist he just trained her.

That being said she went in and did nothing. She said there was superficial Endo and left endo on my bladder, didn't check the rectovaginal area etc. that was in 2013.

In Dec 2013 I wrote a letter to my original surgeon and I pretty much stated how he had let me down. I got an call in Jan 2014 and an appt in Feb and just had surgery May9th. I made sure to come off anything that hormones (marvelon for me) for at least two months prior so that the endo can be seen clearly. Sometimes it will mask the disease and to the untrained eye of a surgeon he could miss it. I didn't have superficial like the other surgeon said and I had deep disease that she just didn't know how to deal with and it was a waste of surgery.  
Avatar universal
I have already had a full hysterectomy my surgeon would not treat me for pain he said he would only provide me with surgery this surgery is something I did not want to do being so young I made the mistake of taking his word for it now I have urinary problems bladder and kidney rectly I cannot use the bathroom and my bladder I have an immense amount of pressure it feels like I'm fixin to give birth I also have pain that goes from my spine my right hip and down my right leg even into my feet I am now being treated for pain when he did my surgery he did not remove the endomitriosis he said it would go away on his own but ar later I had to have surgery again cause a nother tumor form due to the endometriosis left behind I live in pain 24 hours a day I'm wondering if the surgery having hysterectomycould be side effects and that's what's hurting me today.. if you have any feedback on this please contact me I'm being sent from one doctor to the next my blood work like crazy all I know is I don't know how much longer I can take this doctor thing they send you one place to another I'm starting to feel more like a paycheck rather than a patient now I do have 2 very good doctors they concentrate on me and not just druging me what I'm desperately seeking is someone out there that can tell me if my bladder kidney bow leg hip spine pain is from my hysterectomy or could it be because I was not scraped and the endometriosis being left behind after my surgery .is this possible. I had nothing wrong with me besides endomitriosis until after my surgery and now I live in pain trapped in my own body does anyone out there have any of these symptoms .and some advice on how to deal
136956 tn?1425609872
If the endometriosis wasn't removed at the time of the hysterectomy then yes it could be Endo. After much research and talks with many Endo sisters who have had a hyster the results have always been 50/50. I didn't like the odds or the complications. A hysterectomy is never the answer to Endo it's old school mentality for doctors to treat endometriosis in this manner. Lack of education and knowledge on their part which I am saddened to see happen to so many women.

I had a hyster on May 9th along with excision surgery to remove Endo off the bladder, removal of a rectovaginal nodule, I had to have stents out in to protect the urteters because they were stuck to the pelvic wall along with my right ovary and tubes. I also ha my pelvic wall lining removed not sure why but it might have had to do with the ureters being stuck. I haven't been to my 6 week post op to ask those questions but for me I feel great . Not because I had tr hyster for Endo I had it for closure. I have been through hell and bck and for me I wanted it all out leaving nothing behind. I am sure for the rest of my life I will always have bladder and bowel pain but I accepted that as my disease took too long to diagnose and it went deep into the pelvic floor and organs.

There is no cure for Endo only 80-100% relief with excision surgery from a top specialist even then some people have aggressive Endo so it all depends. I had the best from the get go so I got relief. What I would suggest is finding a specialist to go back in and remove whatever was left behind. I can guide you if you are interested.

Avatar universal
I just got diagnosed with endo to both my ureters. Can someone please refer me to a surgeon specialist who can really take care of this endo? I live in Hawaii and I don't know if there is anybody on the island who can do surgery on me. My gynecologist is starting me on birth control pills and I hope the pain will go away. Thank you for all your help.
1 Comments
Please message me so I don't forget to get back to you. I am going to ask around and see what I can find regarding a surgeon in your area.
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