Now what...

[CryBaby91]

Hi guys, I had my gynecology appointment. Total waste of time, as I suspected. Refused to do anything at all. Feel so deflated. Wanted me on the pill but I refused, I told him I want an answer and a diagnosis before I consider treatment, as I've spent 10 years doing all this and being a guinea pig for different medications...I want to know what is causing all this pain. I also didn't like the side effects of the pill and after 12 years on and off it I have no intentions of going back on it, especially now my husband has permanent contraception! He was not happy about that, so rude, just said "well what do you suggest we do?" So I said we should investigate, and he said "and how do we do that?". I was furious. I said either MRI or Lap? He just said no that's unnecessary at this stage. We would just look at reducing your symptoms, we don't need to do things like that with how young you are!

He also said endometriosis doesn't cause blood in the urine during your period, I told him that it is listed on the endometriosis UK website but he said that's wrong. He also said I've spent too much time online 🙄 that lower back and thigh pain are not related to endo either. And just suggested I see a urologist for the bladder issues because that will be seperate, but he doesn't need to do any further scans like an MRI (only had an ultrasound, not internal just external) or surgery because he thinks my symptoms are totally unrelated, obviously his examinations over the phone are that thorough that he can see into my organs through my voice🤯.

He was just honestly USELESS. Totally ignored my GI issues and suggested I see yet another consultant as he guesses it is IBS...because obviously my GP hasn't ruled that one out years ago 🙄 he even had the nerve to say that my GP has failed to fully investigate other causes and just sent me to them unnecessarily!! I've spent 10 years with my GP investigating countless Autoimmune diseases, they have tried numerous avenues before this one. To assume we haven't is really reckless in my opinion, and just down right rude.

Ughhhhhhhhh 😭😭😭

I'm so done. Done done done. I have had enough and I'm going to go private, I know I need a BSGE (I think I've done the correct acronym lol) centre, but I don't know what I need to ask for, do I ask for just an endometriosis specialist consultation? Going to make an enquiry to my 2 closest centres, does anyone have some advice for what to put in the enquiry? I'm so upset, I don't know where to begin or what to do. I can't complain again, I've spent too much time complaining and I get nowhere. I just want to start the private Healthcare and get sorted finally. Thank you for reading all this if you made it to the end lol.

[AllthatGlitters]

Hi sorry you are going through this, it’s unacceptable and you deserve to know why you are suffering with these symptoms.I have been for a private consultation with a gynaecologist (£200) and then put onto the NHS waiting list for surgery.

I booked with BMI healthcare. All you need to do is decide on which consultant you want, you will find a list on whichever website you go on to book and what their specialty is in gynaecology. As you are paying for it you have the right to choose! I had to ask my GP to refer me to the BMI for a consultation, they give them a brief outline of why you want to see them, then the private hospital get in touch with you to book 😀usually see someone within 1-2 weeks.

As you are paying quite a lot of money to speak to someone, make sure you have a list of questions that are answered. They asked me what treatment I would like, be prepared with your answer so you can make some progress.

X

[CryBaby91 in reply to AllthatGlitters]

Thank you so much, I'll have a look tonight and see what is near me

[635703]

Contact PALS first before you spend your own money. So sorry this is very shitty!

[CryBaby91 in reply to 635703]

I don't think I have the energy love or I would, I've complained about that hospital before and last time I did they just sent me back to my GP and said I should seek a second opinion 🥺 I didn't even want the referral to go to them, I requested a different hospital, but the GP receptionist messed up the paperwork. Took her 4 months to realise as well, so I didn't dare delay it any further. Xxx

[635703 in reply to CryBaby91]

Ugh! So so so so sorry! That’s rough x x x Hugs and love x x x

[CryBaby91 in reply to 635703]

Thanks sweet, think it's just what we all go through by the sound of it! Which is crappy, but makes me feel less lonely I suppose. Xxx

[635703 in reply to CryBaby91]

It’s so lonely isn’t it....today I had a nap and felt better but exhausted 😴

[CryBaby91]

Omg is there anyone out there who actually wants to help us! This is so frustrating sending lots of love! Xxx

[Dogmad6]

Words fail me! When it comes to endometriosis, the NHS is worse than useless, it's actually mentally damaging! And full of ignorant and arrogant doctors who know nothing about the condition.Go private, highly recommend because it's the only option to get somewhere but get someone who actually has an interest in endometriosis in particular.

Good luck! Private is a different world. xx

[CryBaby91 in reply to Dogmad6]

Thanks love, I'm still so upset after what he said. I think its worse because I expected them to be like that, so it's just made me more depressed because I was right. I've searched out some good endo specialists in my region, going to travel a bit but the one I've found also has an NHS service so that will be a good option

[Dogmad6 in reply to CryBaby91]

Good for you and good luck xx

[PurpleSynesthesia]

Morning lovely,

I wish this wasn't a common scenario.

Unfortunately, you're the only one who can fight your own fight - but know we're all in your corner.

Look up the member named Lindle & scroll through her posts (here's a link) healthunlocked.com/endometr... as she has lots of relevant posts & accurate legal information regarding endo & it's treatment & procedures.

You're allowed to get angry & vent, we totally understand here! Just make sure you don't get defeated.

Standing with you 💕

[CryBaby91 in reply to PurpleSynesthesia]

Thank you so much, I'll have a read through now

[moonandstar]

It is so sad to hear of your frustrating, belittling experience and to know that women's health is dismissed in this way and has been for decades. I totally agree about not wanting to take the pill again. It has side-effects! The doctors don't mention that and they use it as a lazy fix all. Have you seen that the government are asking for women's voices on their women's health strategy!! Please fill in the survey if you have time. The more women's voices the better. You can write on it everything about your exxperience that you have written here.

gov.uk/government/consultat...

[CryBaby91 in reply to moonandstar]

I'm right on it it's ridiculous how we are made to feel!

[CryBaby91]

Just to let you all know that I took charge and booked myself a private consultation with a BSGE registered gynecologist who specializes in moderate to severe endo, including endo on the bladder and colon. He has fab reviews and even has an NHS list, so I'm really hoping he can help