I have a telephone appointment with an endo consultant tomorrow. First appointment since being diagnosed with endometriosis through laparoscopy last October. I have lots of questions for them. But the main thing I want to ask on here is about urine infections and endo.
I find that a LOT of my symptoms of my endometriosis are similar to those of water infections or bacterial vaginosis. So I never know which is which. I have often been to the doctors with UTI symptoms and have been given antibiotics, but then my urine sample has come back as all clear. In January my urine was tested at my GP Centre 4 times over the space of two months. All clear. But I was experiencing UTI symptoms.
- Pain in back, sides, abdomen and pelvic region.
- Cloudy urine.
- Needing to get up to urinate 6+ times a night.
- Different and stronger vaginal odour.
- Extreme fatigue.
- Desperate need to urinate.
- Discomfort or burning when I go to the toilet.
These symptoms have been going on for 8 months now. I know that a lot of them are also symptoms of endometriosis. How do I know if I have a UTI, bacterial vaginosis or a bladder issues or if it’s symptoms of endometriosis growing on or around my bladder etc?
Should the consultant be able to help with these questions when I speak to him/her? I will also be asking questions around pain medication because I’m not coping very well and am needing to sleep a lot.
Thank you for reading, and if you have any similar experiences or advice or support, I would very much appreciate it. Love to you all. Stay safe. X
Written by
EndoEffect
To view profiles and participate in discussions please or .
Ask for a referral to a urologist and pain management. Make a list of concerns and questions and have it with you on the day. Have a pen too. My betting money is on endo in the bladder rather than a UTI but I am not a qualified doctor. Good luck. To rule out other likely bladder issues, a urologist should first assess you and then offer answers and advice on your treatment options. Let us know what happens during the appointment.
Hi I have the same and they diagnosed me with Interstitial Cystitis: which was made worse by my endo flare ups; see below I have copied the symptoms from NHS WEBSITE.
Interstitial cystitis
OVERVIEW
SYMPTOMS
TREATMENTS
NEWS
Symptoms
Description
Symptoms of interstitial cystitis include pain low down in your tummy, sudden urges to pee and needing to pee more often than normal.
The main symptoms of interstitial cystitis are:
intense pelvic pain (felt below your bellybutton)
sudden strong urges to pee
needing to pee more often than normal
waking up several times during the night to go to the toilet
The pain may be worse when your bladder is full and may be temporarily relieved when you go to the toilet.
You might also find the pain is worse during periods or after having certain foods or drinks.
The symptoms will often come and go in phases. You may have episodes lasting days, weeks or months where your symptoms improve, followed by times when they're worse.
Hey, I had similar issues and I was reffered to a urologist-my women’s hospital has a specific gynae urology clinic so they are slightly better for endo than just the urology clinic! So that’s an option to look for! I’ve been put on antibiotics for 3 months and I’m going for more tests next week so we’ll see if that helps! Feel free to message me if you have any more questions tho x
Experiencing all the same symptoms! Hope your appointment goes well today. I’d be interested to hear how you get on if that’s ok as I think this is something I should look into too.
Thank you so much for all of your replies everyone!!! So incredibly helpful! That’s why this forum is so amazing. You’re all brilliant and so strong for battling with endo. Lots of love to you all. I’ll let you know what happens in regards to my appointment today x
Hi everyone. I am so frustrated. My first telephone appointment was meant to be Friday 12th June at 2:20pm and I waited all afternoon and nobody rang me. I called the hospital on the Monday and they apologised and said the department had been busy. They rebooked me an appointment for today (Friday 10th July) at 1:30pm. Again, I have been sat by my phone all afternoon. I even rang a few days ago to make sure it was still going ahead and they had all my correct details. Nobody rang me this afternoon. I rang the appointments team after an hour and they said that there might be a backlog and to keep waiting, but to call back before the appointments desk closes at 4pm if I still hadn’t heard anything. I called back. She tried to get hold of anyone in gynaecology and tried all of their phone numbers to no avail. So again, I’m sat here with no answers and in pain. The appointments lady said to call back on Tuesday and because I have had two appointments and not been contacted either time, I should be able to have my case escalated to a higher level. I am just so disheartened and disappointed. This wouldn’t have happened if the appointment had been face to face. They wouldn’t have left me sat in the waiting room all afternoon, twice, with no answers and nobody seeing me or speaking to me. So why is it happening with these telephone appointments?? I keep getting my hopes up about talking to someone. X
Hi. I have had the same as you regarding repeated cystitis, constantly returning negative by the lab, constantly prescribed antibiotics that gave me thrush in the end. Finally referred to a urogynaecologist who diagnosed straight away interstitial cystitis. Effectively, it means that the bladder is irritated it could be with food (caffeine, tomato sauces, purée, citrus fruits, etc), stress as well, even being mildly dehydrated. In the case of interstitial cystitis, cranberry juice makes it worse, so avoid it as, effectively, there are no bacteries to flush out. I was advised by a friend to get products containing sodium citrate, such as canesten cystitis, Cystocalm. I usually take it at the very first signs. Having had to fight with the GP for a cytoscopy, after a minimum of 10 years of repeated cystitis, only,, the urologist advised me to get some D-Manose. It is a powder that you mix with water and drink, the taste is not unpleasant. I buy it from an company based in the UK called Sweet cures that also offers a customer service, so any questions, any help you may need, at least you can talk to someone. I ordered mine in the middle of the COVID19 crisis and their delivery time was excellent. I do not work for them, I am only talking about my experience. I believe that the D-Manose lines the bladder and reduces/stops the inflammation. Caffeine is a major culprit, at least stop it when you have a cystitis. Drink a lot of water, avoid juices. I have also put myself on an exclusion diet since May 2019 to reduce the inflammation and the pain in my body, such as dairy, gluten, soya, caffeine chocolate, tomato purée, hot spices. Instead I have decaff coffee, gluten free pasta, bread, flour, cakes, coconut /oat/almond milk, vegan chocolate, because I also have IBS D associated with the endo. It has happened that during a cystitis, I have taken both the D-Manose and Cystocalm together and it worked! I always carry in my handbag sachets of Cystocalm which really helps when at work, I could block the cystitis straight away. The GPs are ignorant on all of this from my own long term experience, hence support groups like this are invaluable, I have received advice and support at a time when I no longer knew where to turn to as the GPs'own words were 'there is nothing to be done'. Keep calling your hospital, the consultant'secretary they are not against you, they are just under a lot of pressure.
Thank you so much! I am so grateful for the advise. I’ll look into getting some of the products you have mentioned and I’ll post about the results from my appointment when I finally have it. They may refer me to urology as many have suggested. I am so grateful for the NHS. They have been a fantastic service and support throughout my life so far. I just get selfishly frustrated when I’m being given appointment after appointment and have to sit in my house, with my notepad and mobile nearby, ALL day waiting, and nobody calls. I am never ever rude to staff when I chase things up though. I am always kind and respectful and thankful. But often that gets me nowhere. X
Don't worry, we all get frustrated, but keep your calm, you will get there. At worst, if they keep forgetting your appointment, you can also complaint to PALS (complaints service at the hospital).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Endo on the bladder
Endo inside the bladder/ weakness
Endo on US ligaments and interstitial cystitis 
Endo and Bladder Infections?
Stabbing pain and bowel trouble 6 week’s post laparoscopy 
