What else can I do??

I am writing this as a mum trying desperately to support my 14 year old daughter who has suspected endometriosis. She has had horrendous periods from day 1 and has tried mefenamic acid, tranexamic acid to reduce flow/clots along with accupuncture before being put on Rigevidon. Her pain since going on the pill has been a constant 7/10 and she is exhausted. She has missed a lot of school and it is the start of her GCSE's!

Given it was suspected she had appendicitis at first, she had an ultrasound in September, which identified fluid in the pouch of Douglas.... I was reassured this was retrograde menstruation and the blood would be reabsorbed by her body in due course.

Following this she was put on the pill and we have been back to the doctor a number of times for pain relief and seem to be held at either tramadol or codeine as the major drug of choice (along with paracetamol and neurofen). Given her inability to tolerate mefenamic acid for her pain relief, the doctor referred us to a gynecologist. We have minimal private health cover and managed to get to see one who says she specialises in endo within two days (thankfully!). She stated my daughter was on the wrong pill and she was moved to Femodette and that she did not like her taking Tramadol...the only pain relief she recommended was paracetamol and neurofen. Well, this is not an option...so she now takes codeine to take the 'edge' off the pain.

We are going back to see the consultant in two days, as her pain has not reduced in the last two months since starting femodette and I am at my wits end. The consultant said it would take time - but this is right?? I have done so much reading, hoping to find an answer and am at a loss as to what to do next or what to push the consultant for.

My daughter is currently on a wheat-free diet to see if this helps things, but I am aware that every day she is putting more oestrogen into her body on a daily basis, so really, it is likely to make a change in her pain?

Has anyone used systemic enzyme therapy? Also, the pain is causing her issues sleeping....any recommendations (she has heat pads/tens machine/pregnancy pillow to help her get comfortable)?

Thanks in advance for your time xx

6 Replies

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  • Hi the best thing you can do for you daughter is to get her seen at a BSGE centre. These are specialist centres set up specifically to treat endo.

    A lot of gynaecologists say they specialise in endo but these centres have consultants who have had extensive training in endo.

    Have a look on the website for one near you. Your GP can refer your daughter to the one of your choice.

    Good luck and I'm glad she has a mum who is doing everything she can to help and support her.

  • I am so sorry that your daughter has been going through so much pain at such a young age. No girl should have to suffer like this. But I am glad that she has such a supportive mum, often family members are quite unsupportive which makes matters worse. I second JeanOsborne's suggestion. Take her to a BSGE center. I have never been to one myself as I am not in UK but I can tell you from my own experience that lot of so-called endometriosis specialists are just regular gynos with some knowledge in endo. If you are UK you should make use of the expertise available to you by visiting a BSGE center. That said, it can take time for medications to show benefits so I would also ask you not to lose hope. In general, I have always been told to give 3 months to any medication before giving up on it.

    It is good that you have put her on a wheat-free diet. In general, the endo diet also recommends avoiding gluten, dairy and dairy products, caffiene, red meat and soy. You may try this for a couple of months to see if it makes a difference and slowly add things back. I also recommend maintaining a food diary to see if any food items are causing problems. Also maintain a pain dairy, these things will help paint a clearer picture for the specialists when they see her.

    She can also try yoga if she is willing. It has helped me a bit. Although it will not cure her, it may reduce the intensity of pain and help her cope better. The one I follow is a free session on youtube by Allana (https://www.youtube.com/watch?v=EWavTG4tQP0&t=1s). She also has a sleep series which she recommends you do after this session. I do that and it helps me sleep better. If you have the means you can also try accupuncture, some people have reported reduction in pain with it. For me, the practice itself did not help but my accupuncturist told me to alternate hot and cold packs, and that helps.

    Lastly, I have started taking ayurvedic medicines in the last 2 months which seems to be helping me a lot. I am not sure if you can access these medicines in UK, they are very popular in India. But I will send you the details of the medicines I take if you want them. Please not that I do not recommend these as a replacement for medical advice, but as a complementary therapy. So you should still try to get her to a BSGE center asap. All the best.

  • Dear Lucy's Mum

    Sorry to hear your daughter is in so much pain. It might be worth talking to the consultant about getting a diagnosis and finding out what is causing the fluid in the pouch of Douglas. Below is information on getting a diagnosis and also it might be worth filling in the pain diary with your daughter as this assists doctors in being able to diagnose what's going on.

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    If you need someone to talk it through with, we have a team of people on our helpline who would be happy to have a chat.

    endometriosis-uk.org/helpline

    Good luck with the consultant

    Louise

    Endometriosis UK

  • Lots of good advice above, a useful book with lots of tips by henrietta Norton about how to manage you endometriosis is available on Amazon, if you are keen on using the diet as a tool to help, and other ideas to support the body through this horrible disease. Be reassured it helps a sufferer to know you have someone there to support you through it, good luck X

  • Thank you for all your advice. We have seen the consultant today and my daughter is now going to be having a CT scan (with the likelihood of a laproscopy). She is stopping the combined pill as she feels the pain is currently too much and would rather return to the awful periods, (even with the benefit of not having a period).

    I asked about systemic enzyme therapy, using serrapeptase and nattokinase, and was told there was not enough evidence to support their use (along with a lot of head shaking).

    I am hoping that focusing further on her diet will be of benefit along with stopping the pill.

  • Sounds like good progress. I saw a nutritionist, privately and recommended to me by a work colleague and fellow suffer, when I was first diagnosed.

    This is worth a read.

    naturalhealthpractice.com/U...

    Marilyn Glenville is highly regarded expert in nutrition for women's health issues. Cannot thank her nutritionists enough for the health improvements I learned and still practice 10 years later.

    Good luck 😊

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