private consultation

[Moll2309]

Tuesday I have my first private consultation after not being taken seriously for potential endo. What shall I take with me? I have had many scans which have been pointless, has anyone had a diagnostic laparoscopic privately?

[AllthatGlitters]

yes I had a lap privately 💛

It’s sad you are not being taken seriously, i would say write down all of your symptoms for your appointment and show it to the doctor.

It may also be worthwhile asking for a MRI as you can sometimes have both endo and adeno x

[Moll2309 in reply to AllthatGlitters]

Thank you so much x

[Moon_maiden]

Hi

Make a list of symptoms and questions. I did a list of symptoms and gave it to consultant to read. He was really good. I did end up having op privately as well. I had the option of his NHS list or private. I opted for private so I knew it would be the consultant and not a registrar.

[Moll2309]

thank you for the reply. How long did you wait to get the op privately?

[mjo44 in reply to Moll2309]

Privately ive had 2 surgeries, the first one i waited 2 week the second one around 3 weeks ...

Hope you get the help you need xx

[Kieraface]

I was in and out of nhs docs for over 14+ years with dodgy bleeding issues. Got hell of a lot worse over last 2 years and this year bled for 81days solid. Nhs said it was nothing and told me to go away so luckily went private. Best thing I ever did. Got an ultrasound there and then and then two weeks later an MRI. Got my surgery in just under 4 weeks time. Private can be an absolute godsend for so many of us with these illnesses. Best of luck with your private consultant x

[Sunset-lady]

I was never taken seriously. Then they tried to do a hysterectomy on Tuesday and found my bowel fused to my cervix and possibly my left ovary. It's old, old endometriosis and so well established that they don't want to touch it. I had excruciating pain when I was younger. Sex was painful too and i would faint and throw up around my period but every doctor just dismissed me. I would totally focus on the pain. I normalised it when I shouldn't have. You know your body best. I'm 50 now and I'm so angry that I didn't push for more help in my 20s. I don't have children either. Good luck.

[TennisCourt]

Hey lovely!!! You are in the exact position I was a few weeks ago.

I have been fobbed off by the NHS for years, waiting times for appointments were a joke so I paid £170 to see a endometriosis specialist. Omg when I say that was the best thing I ever did I mean it!!!

I felt so validated, she took time to listen to my problems and symptoms. She said straight away it’s highly likely I have endometriosis and my next steps is the laparoscopy surgery. (At this point I had ever other test under the sun other than MRI but she said straight to surgery).

So I could either go on NHS waiting list which for my area is 18 months or go private.

For your appointment: I just had my phone which had a note and list of all my symptoms, and I literally read every single one to her. I also showed her the FLO app which I use to track my periods. I even showed her pictures of my severe bloating. I also had a list of questions on my phone which I went through one by one. It can get overwhelming to remember everything so just use that time to discuss everything you want to.

Anyway after a couple of weeks of thinking I have decided to go with private for the surgery as I can’t wait 18 months. It’s just too long suffering, I’ve already wasted 2 years of my 20s being poorly I’m not wasting another 2. My waiting time for private was 2 months as I picked the same specialist as my consultation and she’s quite popular. But 2 months is nothing compared to 18 months!!! My surgery date is 24th of October. The surgery is going to cost £5300. It’s a hell of a lot of money but like I said I just can’t wait another 18 months. And also going private I can choose my surgeon which is the consultant I already saw which makes me much more comfortable and she is on the BSGE list.

Feel free to DM me if you want hun. We are in very similar positions ❤️

[Annabelannabel]

Take a symptoms diary of your periods since you started them and notes of how you have responded to any medication or contraceptives. And write down any symptoms or health issues I had symptoms I didn't think were related to endo and they are. All the best at your consultation I hope you get the care you deserve x

[GiggyT]

Hi!!

So sounds like we had a similar an experience! I was in and out of a and e for over a year after my symptoms got much worse (even though I’ve always had troubles). I was told it ibs even after scans showing ovarian cysts etc. I finally had an investigative scan on NHS which did show endo. But the dr/surgeon I saw privately doesn’t really like to sue ultrasounds as they miss so much. I was just lucky in my scan and had 3 nhs drs doing the scan who were all women and took the time to look into things.

So after seeing the private dr I was referred for an MRI which revealed more signs of endo. So after this we discussed the options and I opted for surgery as I had extensive scarring and adhesions that could be clearly linked to my symptoms. I first saw my dr at the end of June and I had my operation on the Saturday just passed!

It’s a rough surgery but going private I think you have the benefit of having specialised nurses caring for you afterwards and great anaesthetists that can help you have a great home pain relief set up. Feel free to message me if you want to chat anymore about it and the costs! I was self paying so happy to share that with you.

Best of luck!!!

[Moll2309 in reply to GiggyT]

thank you so much. I went to my gp this morning and got evidence from previous scans etc and they are writing me a summary review of all my problems to take with me tomorrow. Thank you for supporting and sharing your experience. I’m here for a chat too if needed x

[endo_the_stigma]

There is a great questionnaire you can fill out on the endometriosis uk website and print out to take with you which will help them gather all the relevant info they'll need. Also ask if they can send you for an MRI because all my ultrasounds and examinations came back normal but my MRI showed endo and adenomyosis which meant I was then straight away referred for a laparoscopy. The wait on the NHS for my lap would be 12-18 months (I would rather die than wait that long at this point) or 2-3 weeks privately so I'm going down the private route. I really hope you get the answers you need♥️

[BloomingMarvellous]

After a lifetime of being dismissed, misdiagnosed and minimised I was lucky enough to go privately. I was then followed through with a private lap which showed old endo , current and adenomyosis. Finally had answers for a lifetime of being told it was either in my head, or not an issue and it did wonders for my mental wellbeing and the information gave me choices. This diagnosis enabled me to see that the bursting cysts, the cysts seen elsewhere on scans relating to cyclical bleeding and pain, the fibromyalgia , migraines all had a reason.

You sound much earlier in the journey and I’d say 💯 % trust yourself either way yah or neigh on endo you’ll gain knowledge and that in itself is worth a whole heap. Self directed care is the best way whatever format private or advocated via NHS because you have the conversation in your hands. Likewise choose your support mechanisms outside of surgical and hormone care to cherish yourself ; be it anti inflammatory diet, exercise, lifestyle or otherwise. Time is key and we don’t have it to fritter away in life . Too much damage is seen incidental rather than as collateral to the time wasting that goes on and our symptoms being disregarded as just women’s stuff. No one deserves to suffer unnecessarily. No prizes for martyrs.

Agree with all above, list the issues the symptoms and be as exact as you can because it helps them search it out. Good luck 🩷

[Moll2309]

thank you for all your responses so lovely to hear so many different experiences and be able to help each other. I’ve got lots of evidence from previous scans, doctors notes, endo questionnaire and my own questions and symptom lists as well as medication list. So hopefully this will help x