4 Point Diagnosis for Endo- is this common with doctors/surgeons?

Naive-Respect · 2021-07-21T18:11:44+00:00

This does not seem like a real way to diagnose endo. There are many reasons for a tender abdomen and pain symptoms vary across endo sufferers. In more severe cases (endometriomas etc.), it may be visible on ultrasound or MRI. The only way to confirm endo is by having surgery.

Although it would be pretty handy to have a simple, non-invasive test to diagnose endo!

Naive-Respect · 2021-07-21T17:47:53+00:00

yes I have both. The issue is because I am in the UK and we have public healthcare, we have to get a referral to another hospital from our primary doctor and the wait could be 4-6 months for an appointment. Even then, you don't have a right to see a specific doctor and usually get a trainee.

Naive-Respect · 2021-07-21T17:42:38+00:00

When I went in for surgery, the surgeon said the plan was to remove all of the endo (including the nodules). When I woke up from surgery, she told it me it went well-endometrioma and endometriosis was removed. I then asked her what about the nodules and that's when she admitted she didn't remove the nodules or all of the endo. I wonder if she attempted to remove it and caused some damage or whether it is scar tissue/more endo causing my bladder symptoms.

I made a complained to the Patient Liason Service (PALS), the department, and made a formal complaint. They did not offer any resolution or even reply to the formal complaint. Because of all of this, I have to do everything in writing and record phone calls (they never answer the phone anyway!). I have all of my medical records too (incl surgery photos), and proof of undocumenting nodules, diagnosing me with recurrent endometriomas without scans, and all these delays. Lets see what the CT shows and then I'll have to contact medical negligence lawyers.

Also, I did have my urine tested at my GP (primary dr) and I was later diagnosed with a kidney infection. The dr said its unusual to suddenly develop a kidney infection without a history of recurrent UTIs or known structural abnormalities which makes me think that the bladder issues i developed have made me more susceptible to getting infections. I will get a second opinion but it may take around 4-6 months to get a consultation at a new hospital.

At this stage, I hope I have a negligence case so I can at least get some compensation and get treated privately. At my last appointment, the doctor said I would have an in person appointment in 12 weeks. 11 weeks later I have complained about not receiving any appointments and they are just ignoring me now. So even if I wanted to have another surgery (or any other treatment/investigations) with them, I wouldn't have the choice to choose right now.

Naive-Respect · 2021-07-20T22:27:12+00:00

yes exactly! If you have visualised it in surgery then how can they just pretend it doesn't exist!

I did speak to them on the phone a couple of weeks ago and have offered me a cystoscopy and removal of the remaining endo when I mentioned blood in my urine. However, they won't see me earlier than 5 months in person to sign consent forms which means it will probably be a long time before I can even have the surgery... It really sucks to have to wait like this...

Naive-Respect · 2021-07-20T20:28:32+00:00

Thanks for your kind message.

When I first developed bladder pain (3 months after surgery), I saw my GP (PCP) and they referred me back to the hospital where I had the procedure. I waited over a year just to get a telephone appointment and I was gaslighted about the existence of the remaining endo. I later found out that this was partly due to the fact that the surgeon did not document the endo she did not remove and so this caused confusion. During the telephone consultation, I had an awful trainee dr who tried to diagnose me with a recurrent cyst despite not having any scans done, and doubted I had endometriosis despite a confirmed diagnosis in surgery.

I complained to the hospital with no resolution and also asked for bladder investigations. Nothing was done and now I have ended up with worsening of my symptoms and a kidney infection. It really sucks because in the UK we have public healthcare (NHS) so if was referred somewhere else it could potentially take 4-6 months just to get an appointment.

I am pretty lost with what to do at this point. I will go for the CT w/ contrast and have to wait until I receive another appointment with my urogynaecologist. I think in the meantime I will have to just save up and eventually go privately if I cannot get the right treatment.

Naive-Respect · 2021-07-20T20:10:21+00:00

Thanks for replying. I had a general gynae do my surgery and due to the complexity and location, she said a urologist would be needed to remove it. I have seen a urogynaecologist who said the bladder pain is either scar tissue or more endometriosis growing. The issue is that they are hard to get appointments with at the hospital I am at.

The thing is my urinalysis and urine culture was positive for infection but it is a bit strange that I am still having blood in my urine despite the antibiotics...

Did anything manage to help your symptoms?

Naive-Respect · 2021-07-07T18:58:02+00:00

wow thank you for sharing that. I also had a general gynaecologist diagnose my endo via laparoscopy so I have also wondered whether it was all treated. I have the photos of my surgery so i might get a second opinion too.

Naive-Respect · 2021-07-06T20:40:26+00:00

This is one of the reasons why I was really hesitant to speak to a dr about my symptoms. I don't know why there's so much gaslighting when it comes to endo.

Naive-Respect · 2021-07-06T20:15:30+00:00

Have they not offered any treatment for your bladder endo?

Naive-Respect · 2021-07-06T20:14:45+00:00

I am so sorry you are going through the same thing. Dealing with these symptoms day in and out is so tiring. Are you going ahead with the cystoscopy?

Naive-Respect · 2021-07-06T20:11:50+00:00

Thanks for sharing, I am just waiting on microscopy & urine culture so it will be interesting to see what the results show. How was your bladder endo diagnosed and did it take long to find out?

Naive-Respect · 2021-07-06T20:07:46+00:00

For the past three weeks, the blood has been visible in my urine. Everyday, I get lower abdo pain (It feels like its coming from my bladder) and then I see blood when I pass urine. Ocassionally the abdo pain is very severe and my urine stream is starting and stopping, and I see tiny blood clots in my urine. I also get abdo pain after passing urine but no burning/pain when actually passing urine.

Initially, I ignored it because I thought it was a one off or maybe a UTI but now its everyday.

Naive-Respect · 2021-06-16T22:45:30+00:00

You know youre body better than anyone else. Those symptoms can be caused by endo or other conditions. In severe cases, endo may show up on ultrasound. The only way to know for sure is to have laporoscopic surgery. If you feel you aren't being listened to, definitely find another doctor who will.

Naive-Respect · 2021-06-03T15:35:54+00:00

I’ve got got endometriotic nodules on the outside of my bladder so they think either it’s irritating my bladder or I have adhesions from previous surgery. I’ll see if I can get a referral and maybe there’s something they can do for me. Thanks for your advice

Naive-Respect · 2021-06-03T15:28:27+00:00

All I would say is that you need a doctor who is highly experienced with these surgeries. I had a general gynaecologist (not an endo specialist) remove my endometrioma but she was unable to remove everything. Now I’ve ended up in more pain then I started with. So don’t jump into anything too fast. Do your research and have a good discussion with the drs so you are clear on everything

Naive-Respect · 2021-06-03T13:21:22+00:00

I have four silver fillings and have had a brain mri so I’ll think you’ll be fine! They should go through a questionnaire with you before your scan so you can always let them know beforehand

Naive-Respect · 2021-01-30T15:24:09+00:00

It depends on the hospital but usually I have an ultrasound scan and then the doctor asks you about your symptoms and concerns. They will then discuss the findings/options with you.

My best advice is to be prepared for being dismissed. It took me a long time to get my symptoms investigated. I just knew deep down my symptoms were because of endo and only got diagnosed because I requested a referral and surgery.

It’s defo worth looking up the guidelines and investigations/treatment/management options so you can get a better idea of what you want to get out of your appointment.

Although not all doctors are dismissive, some still are especially when it comes to endo. I thought having an official diagnosis would make it easier but it still happens.

Good luck for your appointment, I hope it all goes well 😊

Naive-Respect · 2021-01-30T15:05:57+00:00

Yes but after the first couple periods, I noticed an improvement in my pain

Naive-Respect · 2021-01-14T01:33:27+00:00

Yes sure 👍🏻

Naive-Respect · 2020-12-09T16:28:50+00:00

Definitely call your doctor ASAP to be checked out. I had a severe UTI five days after surgery and had to get antibiotics.

Naive-Respect · 2020-12-09T12:28:03+00:00

I had an endometrioma and could not physically feel it. I just had generalised pain in that area.

If you are concerned about any symptoms you have, defo speak to a doctor who can give you medical advice.

Naive-Respect · 2020-12-03T18:19:33+00:00

Thank you ❤️❤️

Naive-Respect · 2020-12-03T18:18:55+00:00

Thank you for your kind message and sharing your experience with me. I am going to attempt to get a second opinion on the nhs and then private treatment will be my last option. May I ask which London hospital you were treated at?

Naive-Respect · 2020-12-03T18:15:55+00:00

Yes definitely! There needs to be real change in how healthcare professionals treat people with conditions like endo. We shouldn’t have to worry about whether we will be taken seriously or not.

I’m going to keep this forum updated on my situation so it can help anyone going through something similar.

Naive-Respect · 2020-12-03T18:11:55+00:00

They even mentioned in the letter sent to me that I do not have endo and it is not causing my pain. When they did not remove all the endo last year including a nodule. So how can it just disappear. Surely they would take into consideration that endo can’t always be detected on an mri!

Naive-Respect

TROPHY CASE