Endo diagnosis nightmare. Please help!

[Endowarrior22]

I began my periods when I was 11 and they were horrific to say the least. I’ve always suffered with heavy flows, blood clots,periods lasting over a week because I had this black like tar when the actual blood had stopped, pain during and after sex, bad back and tummy ache, crazy hormones, IBS, the list is endless.

At this time I was also suffering with lots of water infections. My GP referred me to gynae when I was 15 as they suspected I had endo. I had the keyhole surgery and no endo was found. I then went to see a urologist and found that I suffer from a condition called Trigonitis (inflammation of the trigone in the bladder). To keep this under control I would have the inflammation lasered out every 2 years. As I was diagnosed with this bladder condition and no endo had been found I accepted that my periods were normal and just got on with it.

I had my latest bout of surgery for my bladder condition in November 2018 and my urologist said that this was the worse case he’d seen of this condition for me so far (this was the 3rd time I’d had the surgery done). Ever since then things haven’t been right. I’ve suffered from urinary retention, excruciating pain passing urine, blood in urine, pain in kidneys, abdomen pain, pain in pelvis almost like a pressure building, pain in hips, severe bloating as if I’m pregnant,and pain in my bum to the point I struggle to walk for long, irregular periods, I’ve been into hospital multiple times and still had no answers.

I’ve had CT scans, blood tests, STI checks, ultrasounds. Everything came back clear apart from a cyst that was found on my ovary and a small amount of liquid on my pelvis. My urologist was adamant this wasn’t an issue and has shrugged it off.

I recently went to my GP in agony begging for pain relief as I was so tired from the pain. She asked me for my symptoms, did a pelvic exam and suggested that perhaps, as well as my bladder condition, I also have endometriosis.

I had another meeting with my urologist and discussed what my GP had suggested and he laughed me out of the office saying if I had endo he would had seen it when he was doing my cystoscopy in November.

When I was first checked for endo I was just 15 years old, I’m now 23 and the symptoms I’m suffering from seem to add up with everything I’ve read about this condition. Is my urologist right? If I had endo would he have seen it from all the tests I’ve had done or is the keyhole surgery the only way to be certain?

It also seem strange that my symptoms of endo have flared up since my latest bladder surgery, is that possible?

I apologise for the long post and I hope it makes sense. It’s been a long and frustrating 3 months with no answers and to top it off I’m on the verge of losing my job because of it. Any advice or opinions on this would be greatly appreciated.

Thank you! Xxx

[Cg430]

Hi there I had endometriosis when young but diagnosed by my gynecologist ? Why are u only seeing the urologist ? In my 40s I had a procedure to stop my periods cryoblation . Do u take pain medicine . I think it

Only goes away after your periods stop ? Sorry not much help.

[Endowarrior22 in reply to Cg430]

I've been seeing a urogist because I have a bladder issue. However since I've had my bladder surgery, my endometriosis symptoms have really flared up and become apparent.

I have an appointment to see a gynaecologist this Friday for a second opinion but my urologist is insisstant I don't have endo because I've already had CT, ultrasound, blood tests and a cystocophy done. He seems to think if I have endo it would have been seen through these tests.

[Thecraftyadder]

I don't have a bladder issue as such but was getting bladder symptoms. This is based on my experience from an endo point of view. I've had countless blood tests, ultrasounds and a CT scan in the last year that just showed some fluid in my abdomen and were dismissed as normal. I had a laparoscopy in November that found deep endometriosis in my uterosacral ligament very close to my ureter. Hence for me the bouts of pain on urination and occasional kidney pain are because of the inflammation. I had previously had a laparoscopy years ago by a general gynecologist that apparently showed nothing. My specialist explained that the endometriosis starts growing when you start your periods but it begins microscopicly so its harder to spot in a younger person and can be missed when its deep, especially if the surgery isn't done by a specialist. I think the best person to give an opinion on you would be an endometriosis specialist. I don't see how your urologist can make this decision! Hope you get somewhere with your next appointment!

[Endowarrior22 in reply to Thecraftyadder]

Thank you so much for replying. Your experience sounds very similar to what I'm going through. Did laparoscopy help your symptoms and do you feel any better? I'm terrified of seeing this specialist tomorrow and not being listened to like previous doctors. I'm paying privately for this one so hopefully it's not the case!

[Thecraftyadder in reply to Endowarrior22]

I've had excision surgery. I'm still on the road to recovery as its only been 8 wks and I've still got post opp pain but I can feel some improvement already. Apparently it will take about 4 months to feel the full effects. I went privately in the end to. He was the first doctor who really listened to me. The first battle is diagnosis. I'd focus on that and then deal with worrying about the treatment afterwards. The people on here can guide you through the process. They may ask you to try hormones first before surgery. Let us know how it goes at your appointment!

[Endowarrior22 in reply to Thecraftyadder]

Update. Currently in hospital ward. Went to gp in extreme pain this afternoon, crying and screaming with pain on my right hand side just in from the hips. Gp suspected appendicitis and sent me to A&E. Still in hosp now waiting for blood test results and for more ct and ultrasounds tomorrow morning. I'm convinced this is due to endo as my ovarian cyst is also on the right ovary. Any insights on this also? Sorry for the overload of questions. The torture continues 😭 Hope you're well today x

[Thecraftyadder in reply to Endowarrior22]

You poor thing! Have you been sick at all? If you have a cyst on your right side it could have burst (which would show on the ultrasound as fluid) or twist. I have had a cyst before and also had one burst and the pain was hideous and I vomited but the the pain started to die down after. The reason I had my CT scan was because I was also admitted with suspected appendicitis last June. I know how scary it was. They told me it was a cyst rupture in the end but I'm sure it was endometriosis. Can they get you a gynecology review while you are in?

[Endowarrior22 in reply to Thecraftyadder]

I've not been sick. Just feel like someone is stabbing me and twisting the knife. Currently taking oramorph and IV paracetamol as tablets are taking too long to kick in.

Truth be told the hospital I'm in is terrible and has been helpless in getting me a diagnosis. They've been so awful that I felt no choice but to get my own help and find another doctor. The gynae I'm still hoping to see tomorrow specialises in both urology and gynae and as my issues cover both of those areas I'm hoping he'll listen and understand more than my current doctors.

I'll be interested to see what tomorrow's scans show. Hoping they finally show something!

Thank you again for your correspondence. I think my family think I'm insane and I'm so glad that someone else can confirm these pains with me!

[Thecraftyadder in reply to Endowarrior22]

Actually it was the dreadful treatment I got during my admission last year that made me search out a private specialist. IV is the quickest way. Hope you manage to get some sleep tonight and get to your appt tomorrow. Send us an update on how you are doing.

[Endowarrior22 in reply to Thecraftyadder]

Hi was discharged from hospital last night. Had all the CTs, ultrasounds and x rays done again. Just said I had a really bad water infection. The ultrasound showed some unusual fluid but they didn't elaborate or tell me why. Spoke to the doctors and insisted that I have Endometriosis, they said it was a possibility but as they specialised in urology they couldn't say. Asked to speak to a gynae but they wouldn't do it.

Only positive thing that came out of the whole hospital drama was the morphine for pain. Annoyingly was discharged with only paracetamol which is as helpful as taking smarties!

Because of all this, I missed my appointment on Friday so I've had to re arrange it for next Friday now instead.

Depressed and upset is an understatement

I hope you are well today

[Thecraftyadder in reply to Endowarrior22]

I'd been wondering how you were doing. Hope your pain is under control. Paracetamol is fairly useless is such situations. Free fluid was what they found with me. They said mine was a cyst rupture probably because they knew I'd had a cyst in the past. However I subsequently read that fluid in your abdomen can be from inflammation (which would fit with endometriosis I reckon). I know it's frustrating to be admitted to hospital and get no where (I broke down and cried over the poor junior doctor who did my discharge paperwork) but at least you have another appointment with the specialist. It's only 5 more days and then hopefully you'll get some answers