Possible Urinary Endometriosis

[J_Bav101]

Hi all,

Long and complicated story about diagnosis and an operation but basically I don’t think it helped.

I have cerebral palsy and have had since birth but what I didn’t see coming was when I started off with heavy periods from the age of 13 and my GP started me on Mefanamic Acid which didn’t help. They changed my pain medication to Paracetamol and Ibruprofen.

Fast forward about three years (16) and I begin taking all sorts of contraceptive pills all for three-six month intervals: Femodette, Regividon, Necraz and Cerazette. No sign of improvement on the regularity or heaviness.

When that didn’t work (17) I was given the implant for which I bled three weeks at a time for three months before my GP realised that wasn’t working for me either. My pain meds weren’t up to standard either and I was given Co-codamol to help combat this.

We then tried the injection and that really messed things up. At first things settled and for month I saw improvement on the regularity. In the second and third month, however, I was bleeding for a week and three days then had a day off, bled for another week, had two days off, then bled for another week, before not bleeding for four days. This was then followed by a further three weeks of consistently bleeding. Me and the GP stopped that and tried the Mirena coil. Along with upping my Co-codamol to something stronger and adding Naproxen and a new drug Nefapam that made me throw up 6 times in one day. I was told I was allergic and was to stop it indefinitely.

I had the Mirena coil fitted on the 1st August 2016 and I was 19. I bled non-stop for a year and a half before the GP decided on doing the necessary scans for a referral to the gynaecology department at Northampton General Hospital. I was also diagnosed with Anaemia. It all came back clear with no signs of PCOS or Fibroids. It took a further 6 months for the actual referral to go through before my first appointment. Because it was kept being ‘in review’ when the GP said that the referral was going to be made after the scans were done.

At my first appointment, I had been sent for a laparoscopy. I was told I would be waiting 6 months. Well, after 6 months and having done pre-op, I hadn’t heard anything so called the secretary.

Eventually, on the 11th of November 2017 at the age of 20. I had my diagnostic laparoscopy that confirmed I had Stage 1 Endometriosis and that they treated with excision and heat ablation. It was unusual because I didn’t have any of the other signs for Endometriosis other than my symptoms and so I was told I don’t fit the pattern of most patients who have it. In the lead up to the diagnostics.

After symptoms persisted for a further 3 months I saw my GP who suggested I take another pill called Mercilon and gave me a referral back to my gynaecologist.

I’m now 21 and almost a year after my surgery I am still having ‘Endometriosis flare-ups’ where I have been sent to hospital because of my pain. More recently was last Sunday night. I stayed in until Tuesday night and then discharged with the promise of being referred to the chronic pain clinic. None of my tablets have been working. I am on 30/500mg Zapain or Solpadol (two four times a day), 20mg of Baclofen (two 10mg tablets three times a day), 250mg Naproxen (one four times a day) and due to my depression 10mg of Citalopram (once a day).

When I was admitted on last Sunday night, I couldn’t go more than three hours without having Morphine and paracetamol through an IV.

Since the latest admission I am on 10mg Buscapan (one tablet twice a day) and a new mini-pill which is just Desogestrel 150mg. I am also having new symptoms that have begun to emerge which match the similar symptoms of Urinary Endometriosis and my internal scan whilst I was in hospital didn’t show any signs of cysts on the ovaries or anything untoward in my uterus. The hospital literally did three things other than the scan; blood tests, urine tests and a physical exam. The bloods were fine, the urine showed no sign of infection and the physical exam proved that I had nothing going wrong with my bowels.

But I’m still in a lot of pain. I have recently been getting pain where the bladder is and across the lower part of my back and across the sides of my pelvis. I have been unable to sleep and I asked if the hospital could do any other tests whilst I was in there and they said they couldn’t. That everything was fine but that it could be signs of Endometriosis returning.

Here’s the thing though: would urinary Endometriosis show up in a urine test? I have been bleeding for the past two and a half months non-stop so if they saw blood it would have been because I was bleeding anyway. I also have chronic pain anyway so the pain when passing urine is probably due to the fact I’m bleeding still. However, earlier last night I suffered from a stabbing/ punching like pain where the bottom part of the bladder is between the pubic bone and the middle of my pelvis directly in the centre and both sides of the lower part of my pelvis (where the bones at the front are more prominent) whilst urinating. It was that severe that I cried out and was doubled over and was unable to move without help off the toilet seat.

It could be the fact that I’m simply so used to pain that my body thinks it still exists when it doesn’t and because I have been taking my pain meds for so long I have become so what immune to them.

However, considering I don’t follow the normal pattern for Endometriosis anyway. I wonder if it has returned but in a different place, like my bladder.

Is this a reasonable thing to want to investigate further with the gynaecologist? Is there anyone with this condition that could tell me how they were diagnosed? Do I need a second opinion based on what the doctor said about there being no issues with any of the tests done when last admitted? Is there going to be a need for more surgery?

Is Endometriosis recurring in anyone else after surgery?

I hope by sharing my story that I can not only get answers for myself and others but that it can help others understand that they aren’t alone. That there are more people out there with similar problems, that are finding things a lot worse.

Thanks for reading,

Jazz

[Vintagegirl13]

Jazz I'm so very sorry you are going through this. It sounds utterly horrific to say the least. No wonder you are anaemic with Ali that blood loss. Did they give you a blood transfusion? I'm guessing no because you didn't mention it. But I'd be looking into that and if your levels are low enough to require a transfusion. I don't know anything about urinary endometriosis, but if that's something you think you have, and you're having issues with urinating, it might be worthwhile to see a urologist. I had the endometriosis ablation done many many years ago, and yes it can come back. Mine did but was not as bad as it was. I them went into depoprovera injections every 3 months and that stopped all my periods completely. I don't know if you've tried that, but it might be worth looking into it. Just be aware it does have a higher risk of blood clots, but so do songs of the other pills. I'll be following your story and how you care get some help. You also need stronger pain meds in my opinion, but these days it's very hard to get those.

Good luck with everything Jazz xx