My daughter has been suffering for half of her 34 years of life. We seem to be going in circles and getting nowhere with the health professionals. We have been passed back and forth between gastro and gynae specialists but not got a positive diagnosis. We feel that it must be endometriosis because of the pain subsiding briefly just before her period.
I need to find help for her. Any help and advice welcome. 🙏
How would your daughter think about changing her diet and lifestyle? Many women get relief from their symptoms by following an anti inflammatory diet and removing some foods from their diet that may be causing some issues. If so then I would recommend a good nutritional therapist that understands the issues. Dian Shepperson Mills has been to many endometriosis world conferences and been involved with endometriosis charities. See endometriosis.co.uk/
Thank you for your reply.
She has changed her diet but seen minimal improvement. Thank you for the name of the specialist and very interesting that she specifically interested in endo. Definitely something for us to follow up. 👍
I second the Dian Shepperson Mills recommendation. Her book changed my life. Yes, getting a diagnosis is imperative and laparoscopy excision surgery is known as the "gold standard" of endometriosis treatment, but it's not the cure. The key is management and Dian's recommendations are some of the best I've come across.
In terms of medical personnel, I recommend searching for endometriosis specialised clinics and getting a referral (private or NHS based on your situation) to an Endometriosis Consultant. Once you're in their hands, they should either try to diagnose your daughter with an MRI first. Regardless of what is revealed by an MRI (it's not conclusive), you can push for a Diagnostic/ Investigative Laparoscopy.
Surgery is always presented as "last point of call" when really with endometriosis it should be the first. A diagnostic/investigative laparoscopy allows specialists to see what's going on inside and (possibly) treat visible endo. If endometriosis is discovered and it's extensive (i.e. on her organs) the specialist may well recommend a second surgery to treat her with additional specialists as required.
For example, in my current case, an MRI revealed 3 cysts and adheshions between my uterus and rectum. Therefore, I am being put forward for surgery and my gynaecologist (who's an Endometriosis Consultant) is requesting a colorectal specialist attend to treat the endo on my rectum.
I hope that helps!
Thank you for all of your input. Miraculously, an appointment has come through today for next week to see a gynae specialist. So hopefully we can ask all the right questions and, we need to get the book.
Thank you 🙏
Best of luck!
Hiya, I’m the same age as your daughter and am going through the same process at the moment.
I had my first appt with a gynae the other day after a long wait. She said I very likely have endometriosis based on my symptoms.
Because I am trying for a baby, hormonal therapy is not an option for me. She then said a lap is major surgery and something I should not go into lightly. But I said I want to know if I have endometriosis or not. She said, “if you have an mri and it doesn’t show, does that mean you don’t have it” I said no. She then said “if you have a laparoscopy and it doesn’t show, does that mean you don’t have it” and I said no. And she said youre right. You could go through the surgery and be told you don’t have it but you very likely do, they just didn’t find it or didn’t know what to look for.
If I can’t have a baby within 9 months I should go back. She said changing my diet and having pelvic physio is probably where I will see the most difference in my symptoms. So for now I am just on dyclofenac and looking at changing to an anti-inflammatory diet.
I am going to go and see an endometriosis specialist for a 2nd opinion because I am worried if I leave things it might get worse. It’s £220 but I think it’s worth it just to get someone else’s view. Has your daughter seen an endometriosis specialist?
Katie x
Thank you Katie,
Interesting to hear you mention pelvic physio. This is not something that she has been told about, ever. She changed her diet and that did make a difference but not significantly.
She is on NHS list for laparoscopy but no idea how long that will take and in the meantime she is struggling to have a life, let alone work.
Thank you so much for your reply. Good luck in your hoped for pregnancy.
Me and some friends who have endometriosis have pelvic therapy and it really does help with the pain. I pay for it myself because the waitlist on the NHS is crazy. But they teach you how to masssge yourself so you can do it every night. It’s a great skill to learn. May I ask where you are based, just in case it’s near the lady is see.
Has she been referred to an endo specialist for the surgery? If not make sure you push for it.
X
She’s is on NHS waiting list for laparoscopy but no idea how long that is going to take.
We are in Leicester area but can travel to get appropriate input. Very interested in finding out about physio. Thank you 🙏
Let me drop you a DM. 😀
Everyone on here probably already knows I’m a huge fan of pelvic floor physio, so I definitely second this advice. I replied to someone recently about this and you might find this post (and the links I put there) helpful : healthunlocked.com/endometr...
Morning, I struggled with the same issues with the medical professionals. After going privately to get a diagnosis I found out there was no pathway in my area for endometriosis care. It so often gets missed by general gynae. I went and had an advanced scan in a clinic in London and was diagnosed in half an hour with endometriosis this is after 7 years of pushing on the Nhs so a massive relief. If this is an option for you financially I’d really recommend it, they do the scan and then you see the consultant to set out your options for care moving forward all in one appoint. I’m happy to share details if it’s something you’re interested in. Once it’s on your notes you are diagnosed you can push for further care although I have to say it’s still tricky.
If it’s not an option it seems to be very much trying to find a gp who will listen and make the right referrals. I had to change gp practice 3 times to achieve this with my ongoing care.
I’d say it’s very much about getting on the pathway ( often doctors don’t have much knowledge on endo even general gynae consultants ) so you could ask in your practice if there’s a gp who specialises in gynae / endo and then ask them about the pathway for getting a diagnosis. To my knowledge you need a laparoscopy on the nhs to diagnose. But sometimes if it’s advanced an mri or internal ultrasound will pick it up.
I have definitely learned with the nhs that often things don’t get offered unless I specifically asked for them. So going into appointments with specific questions related to the tests you may need to diagnose endo can sometimes set the ball rolling.
One thing I would say is don’t let doctors make you feel disheartened. Keep making appointments and sharing your daughters pain / concern.
I hope this is helpful and if you have any questions I’m happy to answer 🙂
Thank you. It would be helpful to have the private specialist details please.
Good morning my apologies I’ve just picked up your message. The consultants name was Peter Barton smith he works in The endometriosis clinic which is on Harley street London. In one day you go up and have an advanced scan then afterwards an hr long consult with him where he discusses findings, exams you and asks about your symptoms/ history. He’s an excellent surgeon and highly accredited in his work.
I have also seen and can recommend Dr Minas who works in the Nuffield Woking I have gone to him for my follow up care as obv Harley street prices are tricky to keep up with long term.
Hope this is helpful for your daughter
Warm regards
Thank you for taking the time to do this. Very much appreciated. 🙏
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