Help for my 12 year old daughter

[HTG1]

Hi, desperately in need of some help. I’m on here because my 12 year old daughter has had constant pelvic pain since the beginning of January. She hasn’t had a pain free day since then, and is at absolute breaking point saying the pain is the worst it’s ever been and she’s struggling to cope. She describes it as an intense dull ache that feels like everything is a heavy weight and being dragged down. She has had a Cystoscopy that has come back clear and nothing is showing on the ultrasound. They’ve just put her on Amitriptyline but it doesn’t seem to be having an effect so far apart from I think it’s making her more anxious (she’s had 2 bad panic attacks since she’s been taking them) and she has completely lost her appetite. She’s last so much weight and she was thin before. They are telling her to try and go back to school and start her dancing lessons again but she says the pain is too intense. Does have anybody have any advice or someone we could see. We’re desperate!! The other thing I should add is that because of her age, it’s so hard to see people in relevant departments, it all gets done through paediatrics. Went to A and E yesterday and managed to see the surgeons. They are suspecting Endo. Just now waiting for a date for a laparoscopy to confirm. In the meantime, she’s desperately struggling with the pain and because she is a child there is very little she can be given in pain relief. Is there anything people can suggest? Thanks xx

[bantam12]

Has she started her periods ? If not look up Hymen Imperforate. I had it around that age and it’s very painful.

[HTG1 in reply to bantam12]

Hi, yes she started her periods last August.

[kalecolbe12]

I am so sorry she's dealing with this one of my clients daughters is dealing with it too and it was andenomiosis (I may have spelled that wrong) plus some endometriosis.... They need to move her date up so she can get in sooner ...another thing she may try is acupuncture as this can help pain and also something like Cymbalta might help her which is also an antidepressant and anti-anxiety as well as a pain med... I have found a low dose of Cymbalta to help me a lot ....you can go on Facebook site for Cymbalta support and read about it... there are some sites that pan this med but don't read those because when it works it works really well... She should also be with a pain clinic.... The lack of appetite is normal when first starting any of these meds but it should go away within a month or 6 weeks.... You can give her some protein drinks that put weight on maybe she can drink some calories... Best wishes as this is terrible ,oh also look up vulvadynia group on Facebook

[HTG1 in reply to kalecolbe12]

Thank you so much. I’ll make sure I mention the adeno too. That hasn’t been said yet but we are still under paediatrics rather than the pelvic specialists but we have finally got her on the referral list as urgent. Is cymbalata similar to Amitriptyline? Xx

[kalecolbe12 in reply to HTG1]

It's similar but it's a different type of medication amitriptyline does help people with pain but the higher dosage help with depression and anxiety and now Cymbalta is meant for anxiety depression and pain so it works better I think on all three.... As long as they start her on 20 mg and then go up slowly you can go up to 60 mg and some people I know are on amitriptyline and Cymbalta at the same time

[CjamesC]

Hi lovely girls, it is unacceptable of what is going on at the moment... Meanwhile, the only thing that helps is the seeds sac that you are worming it in the microwave for up to 1 min and 30 sec and you just apply it to the painful area; also voltarol suppository works for me. God bless you and I hope this helps. Take care 🥺🤗🙏🌈💛💛💛

[Cloudberry7]

HiyaSo

Sorry to hear that your daughter is in this pain. Sounds truly awful. I don’t have any answers I’m afraid but here are my thoughts..,

From my experience of pelvic floor dysfunction, any swelling/inflammation gives me the same type of pain that your daughter describes.

I have managed this by reducing inflammation in my whole system and by taking amytriptiline.

I have been gluten-free for over a year and that has helped.

Mine is worse when menstruating.

I wonder if her pudendal nerve is effected ?

[pizon]

So very sorry she is dealing with this….I would take her to a pelvic pain Dr. It sounds like how I feel when I get a flare I have pudendal neuralgia..I was unable to take the medication I tried 6 different ones…also if you are in the UK there is a dr in London that help alot of women Dr. Durtnall I would try him before giving her any further medication also look for an herbalist if she is anything like me the meds made me feel worse I hope this helps…I found going more natural my body did better also get the book by Amy Stein curing pelvic pain (I think this was the title) or reliving Pelvic pain….it truly helped me…I hope this is helpful please keep me posted

[Desperateforrelief]

I am so sorry a 12 year old is suffering so,, life is not fair. It could be adenomyosis - I had that. However, it is unusual to be in pain every day of the month with it. Are her periods really heavy? Asking her to go dance is crazy. People who don't live in pain don't seem to understand. My pain felt like what she describes, but way worse during and after my period. I live in the USA so I can't help with a doctor. Heat helps - moist cloth with a heating pad. Be careful with it - I burned myself because the pain was so bad, I didn't feel the burning. Praying and hoping you find an answer. I was visiting the doctor for pain at her age.

[Princesspeach84]

Hi I have endometriosis (stage 4 rectovaginal) and her symptoms sound like mine. Please look into sending her to an endo specialist and not wait on NHS gynae as I and many others have found them useless. I looked into my area and found an endo specialist who does ops through NHS and I paid for initial consultation (£150 worth every penny) she fast tracked me through NHS for op. I really feel for both you and your daughter, it is an absolute fight to be taken seriously and I’m so glad she has you for support. At her age my parents thought I was being dramatic and it wasn’t until my diagnosis at 28 but even then I was told…’but you look ok!’ I’ve had a few procedures but there is hope 🤞 please look into the risks of medication to treat endo before you decide to take them as some leave many nasty side effects. Good luck on getting your daughter help, it must be so frustrating to see her childhood robbed like this. I too have a daughter and it is always my worry she starts being this way too xx

[Desperateforrelief in reply to Princesspeach84]

I was 28 when diagnosed too. They always said I had gastritis when I was young - stomach upset. Everything looked "fine" just as you said. I have 2 daughters 39 and 37 and so far they are doing well, no sign of adenomyosis or endometriosis. Hoping your dauggters are well.

[Indianajones]

I had HPylori it can be found through a blood test l was in intense pain for hours luckily at the time l wasn’t working. It can be treated with antibiotics, l also had a colonoscopy which l wouldn’t recommend without sedation but this is like a factory reset.

[Fascia]

You say this has been going on since January and so assuming all well before then. Did anything untoward happen in January? ie. did your daughter start her periods, or have an accident/fall in her dance class maybe? I'm wondering whether she's torn a muscle (like my daughter did while doing an abdominal workout). An ultrasound showed nothing unusual but she still gets twinges two years later.

Not knowing what it is must be very stressful.