What should I say in my next hospital apt? Having issues getting diagnosis confirmed. Frustrated and getting desperate.

[Clairabelle1988]

Hi, I’ve posted on here late last yr about my struggle getting help and a confirmed diagnosis for endo. In my last appointment (Oct/Nov) during the scan the gynaecologist saw that I have an obliterated pouch of Douglas and my ovaries are quite immobile and sticky, I get ovarian cysts a lot and it may also be in my bowels. She said I also have no fluid in my obliterated pouch. She said to me in person that she’s 99% certain that it’s stage 3/4 endo (my sis has stage 4 too) and with the amount of pain I’ve been in for yrs it all made sense. My GP has been very reluctant to help and I finally got a different GP to send me back to the Gynaecologist cuz they say I need a confirmed diagnosis in order to go to a tertiary care centre. But the other prob is the gynaecologist and GP want me to have a coil, I’m not having the coil (many reasons which also prevent me from being on the pill, same as my sis). They both said my reasons were valid but will not let me go further until I give it a go. I’ve got a different gynaecologist next week and I don’t know what to say in order to get the confirmed diagnosis and to be taken seriously. After reading what the protocol is for an OPD and suspected stage 4 endo they are meant to send me to tertiary care but they’ve basically refused. I want them to have a look inside especially if the endo has spread to my bowel. I feel so lost and defeated especially after my GP has been sending me to the wrong clinic (early preg and acute gynaecology, not endo like they were meant to) for the PAST TWO YEARS! My last appointment and this next one are at a different hospital and that was another reason why I switched GP. Please any advice on what I should say, ask or do would be most helpful. Thank you and sorry this post is a bit all over the place.

[Lindle]

This is absolutely atrocious. An obliterated POD is stage 4. This is confirmed by the staging that is used (see below). Your GP should be referring you straight to a tertiary centre as you already have a confirmed diagnosis from the scan. Transvaginal ultrasound is excellent at diagnosing rectovaginal endo when done by someone who knows how to do it. They look for the 'sliding sign'. When the bowel moves freely against the bowel that is a positive sliding sign which is normal. When they move together because they are stuck this is the negative sliding sign that indicates an obliterated POD and thus rectovaginal endo. As you clearly know yourself this needs referring to a centre. Medical treatment is not appropriate all.

The first thing you need to do is apply for a copy of the scan report; this should give you the diagnosis in writing that you need.

Are you in England?

Staging:

bing.com/images/search?view...

[Clairabelle1988 in reply to Lindle]

Hi yes I am in England, we’ve spoken once before and I told my GP what you said and he replied ‘that’s not how we do things and it doesn’t sound that serious for tertiary care. Just have the coil and it’ll be fine.’ I was livid.

[Lindle in reply to Clairabelle1988]

I think when you get the scan report the best thing, if you have the funds, is to have a private consultation with a BSGE surgeon so that you can get to a centre where you need to be. Your GP will have to refer you then.

[Clairabelle1988 in reply to Lindle]

That’s what I’m thinking too because I’m being denied any further treatment and even investigations unless I have the coil for up to 6 months. I’ve got an appointment on the 16th with a new gynaecologist but he has access to the scan that showed the OPD. if this meeting doesn't go well my family have said they’ll help me go private because I can’t keep a job because of the pain and mental state I’m in. I’ll keep you posted on what happens. Thanks for your messages, it’s amazing to have a place where people don’t make you out to be paranoid.

[Lindle in reply to Clairabelle1988]

Have I given you the NHS England treatment spec for severe endo before? I'll put the link below anyway. Have a really good read so you have all the key facts to hand when you go as to how you must be treated.

england.nhs.uk/wp-content/u...

[white61]

I have the coil and it stopped my bleeding so I no longer bleed when I have periods. It was easy to get used to it and I've had no problems with the coil personally. I still have bad pain but I don't know why yet but they do suggest the coil but I know it's not for everyone but it's not as scary as people make out.

[Clairabelle1988 in reply to white61]

Thanks for your response. I’ve read a lot of women are fine on the coil but I’ve reacted very negatively to all the various contraceptions I’ve tried and developed a blood clot with one and was hospitalised. My sister is the same. My other issue is the damage is still being done despite having the coil, from my understanding the coil only masks what’s going on cuz it can take away the pain and period cycle but doesn’t actually stop the endo. That’s why most women only get a diagnosis when they’re come off birth control like the coil when they’re trying to get pregnant. And when they can’t get pregnant that’s when they find out what damage has been done internally. I’m not planning to have children anymore (had 2 miscarriages and an ectopic) and all I want really is to know what’s going on inside me before having something like the coil inserted. I just want answers especially if it’s spread which it sounds like it has. I’m so glad it’s not given you side effects though, but I do hope the pain gets solved. A lot of my friends have had to have theirs removed but if it’s works for some women then I’m all for it, living with pain is the worst.

[Lindle in reply to Clairabelle1988]

You're absolutely right. The coil will do nothing to stop stage 4 endo.

[Lindle in reply to white61]

Do you have severe stage 4 endo?

[MMich15]

Hi Clairabelle - I honestly can’t believe what I’m reading! I have never heard a GP/doctor making care contingent on trialing a medication first - it just is not SANE! No one can force nor bully you into getting the coil, and withholding care is against the oath they have taken as doctors. I know this may sound like a “severe” next step but I would threaten the GP with reporting him to PALs if he doesn’t refer you stating that he is withholding care for a condition it has been confirmed you have and is aggressive and is affecting the quality of your life, and is CLAIMING that said referral is contingent on you taking a medication that you are wholly in your right to refuse, in fact other medical professionals have agreed with your stance. And that if he doesn’t complete the referral you’ll have no choice but to report his misconduct. Use whatever threatening words and strategies you have too, I see it time and time again in this forum - women being messed around and care being withheld, it’s deplorable! That they’ll stoop to pushing pharmaceuticals for monetary gain, with no concern for your health whatsoever is disgusting. It’s why you see the same meds time and time again: first it was Yasmin, then decapeptyl and zoladex, then the coil and now visanne - they’re given “drugs of the month” to push and hit their quotas. I just hope you don’t feel pressured to take something you don’t want, potentially do more harm than good to your body, just to follow this GPs made up protocol - it most definitely isn’t legitimate. I hope you get to tertiary care soon!

[Missy100]

On the NHS you qualify for a second opinion. If your current gynonis not assisting you can request for a referral for a second opinion and it is possible for your GP to refer.you to a BSGE centre if they believe you have endo that qualifies you. This is how I was referred to one. I did do the research ahead of time myself and specified which one I wanted referring to when I had my GP appointment requesting the referral (based on the closest one to where I live).

However, they are not the automatic success you might think. Despite my referral my GP did not specifically put endometriosis on the referral which caused further issues and delays, so you need to stress it needs to be stated on the referral letter. Also, the centres can have waiting lists even before Covid, which has made the situation worse. Basically, I'm just warning you that you may have a further wait ahead.

Keeping the above in mind, I recommend pushing ahead as waiting may just lead to further unnecessary delays.

On a side note, you have the right to refuse any treatment option presented (whether your Dr listens and understands your reasons or not) and have other options (provided they exist) offered to you. Your Dr may stress this as the better option based on what is 'typically' done process wise, prior success rates, etc but it doesn't mean it is the right treaent option for you as an individual. Other options may have higher risks associated with them, but your Dr should still offer them, while making sure to also advise you of the possible associated risk.

I wish you success in getting the care you need and deserve.