Getting second opinion. NHS say unable to refer me to specialist, I must go private.

[Kay92jay]

Hi, I was referred to a gynaecologist by the NHS due to having chronic pelvic pain, heavy periods, fatigue, uncomfortable bowel and bladder movements which unfortunately over the last few years have been there for around 20 days of the days of each month.

This doctor advised he thought it was endometriosis and said I would need a pelvic scan but more thank likely will be laparoscopy. He said he would book my appoint for 6 weeks time to allow the time for the scan and results.

When I got my appointment through, it was in 4 and a half months. After speaking to his secretary she advised that “clearly there is nothing concerning on your scans for him to not see you sooner” Feeling frustrated, I booked a private consolation with this doctor.

When I got to the appointment he advised he had not yet seen the scans and although I had given the private hospital everything they needed to request the information, the doctor had no notes or scans to go from, but filled in the paper work for a laparoscopy based on viewing the scans the next day and if I didn’t hear from him, it meant that we were on for the laparoscopy. He promised he would do all he could to help me get my life back.

I never heard back from him so I called and was then given the information to arrange a date for the laparoscopy.

I had the laparoscopy 2 weeks ago, and was told Monday that he could not find any reason for the pain. I have asked the areas checked, to which he said that it was the pelvic wall, uterus, ovaries and urinary bladder. However the images he shown me in the consolation was of my ovaries and pelvic wall, he said one of my ovaries was significantly larger than the other but no one knows how big ovaries should be.. and that he was referring me to a bowel specialist to check my bowels.

After checking the endometriosis charity document it advises that the bowel and pouch of Douglas should be checked also, I have also been given the website to find specialists.

There is a specialist endometriosis clinic at the hospital this doctor works for, for the NHS, the same place I had my scans and he looked at my results. I have spoken with my GP today to ask to be referred there and she advised that unless it’s a confirmed case of endometriosis the NHS can’t refer me, but I can pay to see them privately….

Personally I think this doctor has a moral obligation to tell me that there was a clinic at the hospital he works for, for the NHS and if I was paying for it, to go to a specialist to be checked properly. I have an appointment booked on Tuesday next week with a specialist and will have my images and notes from surgery to go through with him, but again I am now paying for this consultation.

Can anyone confirm if they have been advised this by the NHS? If a specialist is the best person to see for diagnosis, how can it be that you have to see doctors without an interest in endo to rely on a diagnosis? It just seems wrong ☹️

[Lindle]

The situation can vary a bit depending on where you are in the UK. Are you in England?

[Kay92jay in reply to Lindle]

Hello, yes I am in England

[Heloo85]

All gyneas can diagnose Endometriosis! It can’t be mistaken! The BSGE centres that you’re referring too, are not specialist in diagnosing Endometriosis! They’re specialists in treating complex cases of endometriosis! Stage 3/4 involving multiple organ! The patients who, when opened, look like a bomb went off! Organs distorted! Ect ect!

Yes your Dr was correct! No you can’t go to a BSGE centre without a confirmed diagnosis of severe endometriosis or endometriosis refractory to treatment!

Xx

[Kay92jay in reply to Heloo85]

Hello, thank you for coming back to me.

As all areas were not checked, I now have to continue with a bowel specialist with the GP.

I have been in significant pain since I was 12 years old, between the ages of 12 and 16 I had over 20 appointments with my GP due to heavy periods and chronic pain. And further appointments since.

It just seems odd that I can pay to go to a specialist without a diagnosis, but cannot through the NHS,

I will have all the images from surgery tomorrow and have an appointment Tuesday for a second opinion. If I could’ve paid the same money, from which I can see from their website how much it costs for a laparoscopy, to see a specialist and to be checked out properly with the support of surgeons who can do the bowel, Fallopian tubes, pouch of Douglas and bladder at the same time I would’ve done so.

This doctor spent about a minute and half with me prior to surgery, I was an hour and a half going down to surgery, according to my discharge document, and was in recovery for 45 minutes according to staff, which means a grand total of around 20-25 minutes was spent investigating.

If it is not endo, that is fine I would just like to know what it is and what needs to be done. The reason I have thought of endo, is because that is what the gyno advised he thought it was x

[Bing73]

Have you considered Adenomyosis ? Similar symptoms and often overlooked by specialists despite 1 in 10 women having. Diagnosed by MRI with contrast. Regarding access to services - you can have anything done if you’re paying, the NHS has clinical pathways that clinicians must follow in order for patients to seek treatment. If you’re hitting brick walls - contact the women’s health commissioning manager in your area’s commissioning trust.

[Kay92jay in reply to Bing73]

Hi ladies, thank you. I have obtained a second opinion from a specialist with the images from surgery, who has confirmed he can see endo on my pelvic wall and would like me to have a laparoscopy so he can do a thorough investigation as he said there was only one good image, the rest were poor. I have said I’m not ready to go through it again, it’s only been three weeks so he is putting me on the prostap injections for 6 months and we will go again xxx

[bluebug]

I'm sorry you had a laparoscopy when you may have not needed it.

Adenomyosis can be diagnosed by MRI, as Bing73 said, but also be diagnosed by ultrasound. Though you need to be scanned by someone who specialises in it and not just any sonographer.

Endometriosis UK have info on Adenomyosis and the difficulty in diagnosing it.

I presume that GP your GP referred you for a MRI or ultrasound first? As that what mine did and only because something was found on my scan was I referred to an NHS gynaecologist. (The sonographer told me while I was in the appointment that she had noticed something and kept checking what day of my cycle I was on.)

I was told by my GP that due to the size of the NHS list they have specific criteria, which was not shared with me, on who is accepted on the list. I clearly got a cancellation as I heard nothing from them for 5 months then was sent an appointment with a weeks notice by SMS. There as any previous hospital appointments I have always got a letter with a month or much more notice.

[Kay92jay in reply to bluebug]

Hi ladies, thank you. I have obtained a second opinion from a specialist with the images from surgery, who has confirmed he can see endo on my pelvic wall and would like me to have a laparoscopy so he can do a thorough investigation as he said there was only one good image, the rest were poor. I have said I’m not ready to go through it again, it’s only been three weeks so he is putting me on the prostap injections for 6 months and we will go again xxx

[Sholla]

Can l ask you a personal question, how old are you? I ask because I'm a older woman that thinks l have endo. My gps have treated me atrociously. I'll go more if needs be.

[Kay92jay in reply to Sholla]

Hi Sholla, I have just turned 30 x

[Sabrinacolada]

Hi,

Sorry you are going through this.

Can you request your actual surgical report from the private surgeon and not just the pictures? I had private surgery but then developed issues with some nerve sensation ( likely unrelated) thus I managed to see the surgeon in person addressing my concerns/ worries and suggesting ways forward of investigation. I too was also concerned with the pouch of douglas. In my case we are doing mri just to ensure no deep infiltrative endo lesions.

Since you have paid private ask very specific questions. Was the pouch of Douglas checked? Any Uterine thickening etc or anything suggestive of adenomyosis? Explain your signs again and your concerns. I actually took a notebook of questions so I didn't forget anything. Start again by going through all your symptoms and any changes since.

I'd also suggest taking a male family member / friend etc with you if you do book to see the surgeon. Shouldn't matter in this day and age but unfortunately I have felt ignored alot by some clinicians or had the symptoms downplayed. I am a veterinarian so quite happy to ask clinical questions to consultants but still find they listen more to my brother!

Is your gp/ gynae in possession of the private clinics notes? Unfortunately I found myself in the situation of although had private surgery still also being followed up by a GP as I found some gaps in private hospital aftercare! However if you have a good one and still get no luck with the surgeon maybe book with your gp to discuss in depths / explain what they've found or not found and their plan to get an answer. Ask also regarding colonoscopy or mri. These are other tests in order to assess further to rule out true bowel issues ( colonoscope and biopsy) or as the others have said adenomyosis via mri ( nb my surgeon said even looking externally it looks likely I have that thus see if your surgeon comments).

I hope you get some answers and the treatment you need.

Sabrina x

[Kay92jay in reply to Sabrinacolada]

Hi ladies, thank you. I have obtained a second opinion from a specialist with the images from surgery, who has confirmed he can see endo on my pelvic wall and would like me to have a laparoscopy so he can do a thorough investigation as he said there was only one good image, the rest were poor. I have said I’m not ready to go through it again, it’s only been three weeks so he is putting me on the prostap injections for 6 months and we will go again xxx

[Sabrinacolada in reply to Kay92jay]

That's good that you was able to get answers.So sorry that this was missed prior. I hope the injection can manage symptoms until you can get the follow up etc. Good luck and send hugs xx

[Kay92jay in reply to Sabrinacolada]

Thank you, I am sorry to hear what you have went through. I am going to go back to the gynaecologist with my letter from the specialist as I agree with you, I wasn’t really looked after through any of it, I wasn’t seen after my surgery and had to wait two weeks for information. Even that appointment he was 25 minutes late for, and I was in there for about 6 minutes whilst he said “I can’t find anything wrong, we were moving your ovaries around” whilst sniggering to himself which made me feel a little uncomfortable.

With all of the evidence and information I have from the hospital with my notes and images from surgery, I can see he spent a total of 20 mins doing my laparoscopy.

He was running late on the day and had to fit 3 surgeries into 2 and a half hours.

I completely understand what you mean by take someone who is male, I’m sorry to hear your experience hasn’t been great either xx

[Sabrinacolada in reply to Kay92jay]

Maybe you can speak to the practice manager as well after you have spoke to him etc? Long of the short is I didn't request one but about 3 weeks in, no aftercare and a myriad of symptoms I had asked to speak to a consultant and she got involved since there was no gynae consultants there that day! It isn't right that a gynae consultant should speak to you in a manner which makes you feel this way thus should be addressed.

It is also an issue on a hospital level there should be sufficient time allocation for each procedures. Fitting 3 in that time frame could be putting people at risk of misdiagnosis, surgical error. In your case having the risk of an anaesthetic and abdominal procedure, there is no excuse to not be thorough and check common endo sites etc especially given your symptoms. This would be unacceptable even for nhs but private is even worse thus they should be reviewing this.

All the best xx