19 year old daughter suffering

[MissWilliams]

Since 14 desperately painful periods were diagnosed so enduring pain throughout the month and not just during her period. So here we are and some weeks ago we were offered on a free trial a groundbreaking new technique of diagnosing Endo without an invasive technique. Professor Amso at Oaktree clinic Cardiff.

BUT

After the diagnosis we have been to hospital to AE for pain relief namely morphine as she just could not bear the terrible pain.

What else is there to do if the GP does not help and the consultant is keeping us waiting

Will ablation help?

She has done everything including gluten free, supplements,tens machine hot water bottles and every drug under the sun.

I have spent thousands on scans and now I do not know in which direction to go

I would appreciate advice.

[Fireflygem]

Hi there, In a similar boat myself I have a past history of gyney pain and my daughter is in constant pain we've tried the pill, mefenamic and transemativc acid, naproxen and cocodamol but there reluctant to keep giving her cocodamol as it addictive. Based on your post I'm guessing they came back as endo positive Unfortunately any procedure is not guarante that it won't grow back after they target endo and scar tissue/endo can cause adhesions which can attach organs to each other but endo can create scar tissue in the region on its own so it's a difficult one. Alot of the time now surgery is keyhole which might help but again scar tissue loves company. I had investigative keyhole, removal of adhesions and had my tubes and ovaries removed and it was alot better than a previous surgery which was to remove a dermoid cyst off my ovary where they ended up opening me up so possibly a targeted keyhole surgery could help but they make no guarantees it won't come back I've had gyney issues all my life and they can't promise it will fix everything but it gave me less pain having the surgeries at the cost of scar tissue pain but that's more manageable, if there in agony then I'd go forward with the procedure and hopefully provide relief even if there's the risk of it coming back also as a side note is the pain worse when bending or moving as this could be a sign of adhesions essentially organs attached to either other organs or outside walls when you move they pull at organs causing immense pain and for me it caused bowel and bladder problems, there's also the risk of torsion they can check for these when they do surgery and remove them through keyhole where possible I hope thid helps and from a mother to a mother I know how painful seeing your child in agony is, I hope they get what they need and get some relief as soon as possible 🙂

[BloomingMarvellous]

First up a big hug for you as well as your daughter. Mums like you are just brilliant 🤩. I tried a myriad things to help long before any form of diagnosis and some helped and some did well not a lot.

Having a medical training has really helped steer me to hazard a generalised response to my own unknown beast and now it’s quantifiable it’s steps that also work for others. I have to say “not cured “ but well managed. First and foremost there are many different types of endo but broadly none of them respond well to periods of hormonal chaos and extreme change. So adolescence, pregnancy, extreme stress ( grief, exams etc ) and you’ve got it perimenopause and menopause . Stress alone has been observed to drive the growth of lesions because of its effect on the related hormones. When you know you’re in that territory then I’ve always aimed at reducing the size of the waves overall as a first ask. Getting back some sense of moderate control so to speak.

Getting back into the driving seat with it isn’t a single answer only. Especially when you don’t know the extent of the spread, adhensions etc. small areas can cause extreme pain too. Many health issues and endo absolutely falls into needing a multi pronged approach. I like to think of it as 3 legged stool ; biochemistry/chemical, physical and psychological. One alone ain’t going to make the seat stable. Each area needs the key that works for each person and annoyingly there’s no one size fits all as your list proves. That said at least you know they are either moderate or no help.

Working on general inflammation helps enormously but any nutritional change can take up to 3 months to really demonstrate its effectiveness or not. Tempting as it is to throw the whole book at it all at once the outcome is often a very restrictive and heavy on supplements way of going about things which is little help long term. I’ve found for me the key is high quality Omega 3, Quercitin with bromelian and Reservatorol . All at dose and professional quality supplements. I am egg allergic which found out in my 40’s and that really stabilised my hormones when they came out of my diet, am fine on wheat but lactose is an issue for me and aggravates pain. I have a Mediterranean type diet that’s nutrient dense because endo uses a lot of energy. I’ve found a book that pretty much covers a lot of the research territory that I looked at over the years that draws this type of approach really well - Katie Edmonds, Heal Endo and it’s worth the time to dig deep through that.

I’ve needed surgery, nutrition, regular pain relief ( I use a tiny dose 5mg ) of Nortriptyline, specialist pelvic physio (try listening to Leah Bruegs interview of Dr Angie Muller to get the background info here @leah.brueg . There’s a link on her page for podcasts and it’s number 52 last time I looked ) regular walking , I use Curable App which has been a huge help in reducing the level and frequency of my flares. What has aggravated my situation is progesterones and progestins, stress, hormone chaos as being at the top of the tree and infections. When my immune flares up so does the endo.

When something doesn’t work that can be helpful in directing you away from one type of endo towards another approach. I’ve tended to observe if a person responds well to a general approach on one thing then the rest of a particular way tends to benefit them too. It sounds to me like you’ve not yet found the right key for the type of endo she’s facing. You might also want to explore the University of Edinburgh’s recent studies done with Sodium Dicholoactetate which has had great results. Did zero for me but then a similar product NAC that others swear by did nothing either.

I hope you find your magic soon x