Bladder issues

[moomoo1998]

I have confirmed adenomyosis and suspected endometriosis, I'm at a loss at the moment. I keep having pain when I pee and I am not sure what I can do. Been to the doctors who offer me the coil, mini pill or a dipstick test to see if it's a uti (never is) or I just have to wait around 6 months for a gynecology appointment. I am just so sick of all this, my main symptom for 5 years before anybody told me what it was/ could be 5 years of constant antibiotics now I've got to wait months for treatment if they gynecologist is any good

[Jojo1207]

Hi, I’m sorry you are not getting the help you need. It sounds similar to my symptoms. I had a diagnostic laparoscopy in 2015, and was diagnosed with stage 3/4 DIE Endo in multiple places especially wrapped around my Ureter. I was also diagnosed with adenomyosis. This is what was causing my urinary symptoms. I was constantly getting UTI’s and cystitis symptoms and pain when passing urine. You can also get Endo in your bladder. I would ask to be referred to a BSGE centre where they specialise in Endo, you will need a urologist involved in your care. This is not to say that you may have Endo to the extent that I had, as Endo is a funny thing, some women have mild Endo but severe symptoms, and some have severe Endo with no symptoms. There is no rhyme or reason to it. However it needs investigating if only to rule out Endo if it is just suspected at the mo. If it is not Endo then I suggest you ask to be referred to a urologist.

Good luck, I hope you get things sorted and start to feel better soon.

[moomoo1998 in reply to Jojo1207]

I actually had a urology appointment last week to insert a camera but I couldn't go through with it. I felt like the consultant was trying to put me off too. Got an appointment in January because they want to see me after I have seen gynecology but the waiting list is just so long I appreciate the NHS is free but why should I and so many other women have to suffer like this for years before getting anything done. It's now been 5.5 years and I'm so fed up at this point

[alicexmae]

I have endometriosis but my worst symptom is bladder pain, especially after peeing. The symptoms always seem like a UTI but tests are always negative for infection. I also had a cystoscopy which was normal. A specialist thought I had interstitial cystitis/painful bladder syndrome secondary to my endometriosis, and recommended desogestrel in addition to the mirena coil I already had and the low dose amitriptyline she had started. I didn't see any benefit from this until gynaecology doubled my desogestrel dose to 150mcg daily, but the symptoms are a lot better now. Diet can also affect bladder pain- have a look at the interstitial cystitis food list here (ichelp.org/wp-content/uploa..., I don't follow it closely by any means but it might help you to identify any food triggers. Good luck!

[Nikkky]

Hi, I had both conditions and I did get bladder irritation & pain on weeing. I had a normal result on a cystoscopy so I’m not sure if it’s just a symptom anyway without the disease actually being in your bladder. The Mirena coil worked really well for me as it delivers progesterone to the area that you need it. It was the first time in years that I was pain free but I had to have it changed after 18 months. It gradually produces less progesterone over time, so while the level is fine for contraception it wasn’t enough to keep my pain at bay. I eventually had a hysterectomy but that’s another story-it doesn’t necessarily solve the problems!