Hi everyone I’m new to this but feel I need support and answers I feel totally helpless as my daughter is so young. She will be 15 next month and has had symptoms for a year now. She literally has 3 weeks normal life and 1 week in agony. Paracetamol does nothing she has been admitted to hospital twice with the pain. She has had ultrasounds and it’s shown nothing they suspected bowel disease as she was getting blood in her stool but they know it’s bit that now so finally getting a video call with a gynaecologist so getting prepared I just hope she gets taken seriously due to her age.
My 14 year old has her 1st gynae appointm... - Endometriosis UK
HiMy 1st experience with a Gyna happened when I was 15 that was many moons ago and the experience wasn't that good but I had my mum with me so I felt safe. Nowadays understanding and research have improved treatment for Gyna conditions. With you beside her for support all will be well. Suggest you and your daughter write down the symptoms and any questions you wish to ask as you don't want to finish the call and forget something. If you feel your daughter is not being taken seriously there are Pediatric and Adolescent Gynaecologists. Good luck
Hi thank u for your reply how old were u when u got diagnosed then? I’m glad she’s not the only one being so young. She has a diary from last year so ready for that bit just not sure if to push for a laproscaphy or is she too young but then how will she get diagnosed if not. She got put on the pill last year and that didn’t help with anything. She feels sick all the time due to pain so not eating and losing lots of weight very worried mum but I will be with her every step of the way
Was not diagnosed with anything at 15 she just told my mum she could not find anything wrong with me. Was put on the pill in my 20s, got diagnosed with Endo in my 30s when for 1 week in four I could not function properly, same as my mum when she was my age. There are a couple of mums on this site who have found themselves in the same position as you. Let us know how the consultation goes. 🤞
Hi there, I completely understand your apprehension. I first started getting unusual symptoms when I was 14 and was diagnosed when I was 22. I think writing down all the symptoms really helps, it's also a good idea to ask for a referral to a consultant, as this was the only way that I was able to get my diagnosis. Research has really come on but it can still be tricky to be taken seriously but knowledge is power. My tip would be to know what you want out of the conversation, the only way to diagnose endo is through a laparoscopy so I would bring this up in the conversation to show the gynie that you mean business. My only main tip would be to keep talking about this and to encourage your daughter to be comfortable and confident. The process of getting diagnosed can be quite invasive in terms of examinations and tests, but it's definitely worth it and you sound like a wonderful mother to support her on the process! Best wishes, xx
also ibuprofen helps me more than paracetamol, and a tens machine can be a great option too as she can wear this at school etc to help with the pain X
Thank u for your reply I’m trying my best but it’s so hard to see her in pain she also takes ibrofen and it doesn’t touch it. I have everything written down I think it’s hard as it’s a video call. I’m really sorry it took u so long to be diagnosed it scares me so much to think the same will happen to my daughter I need to push everything for sure x
So it could be useful for you to look up the NICE NHS guidelines for diagnosising and treating endo. It states the pathways for teenagers etc in it. Which can help you ensure that the gynaecologists follows the pathway and what should happened next etc.
Hi I know how you feel with your daughter, it's so tough seeing them in pain and not knowing what to do about it. My daughter was 17 when pain started and was lucky to have a laparoscopy a year later, it was initially to remove a cyst but endometriosis was found. However she was seen by a general gynacologist and should have been seen by a gynacologist with a special interest in endometriosis. Please when you ask for a referral you insist on this as laid out in the NICE guidelines 2017. We are now pushing for this as my daughters pain has got a lot worse and I think she was not properly investigated at the time. Make a list of all symptoms including fatigue as this is also a symptom. Painkillers are trial and error, my daughter is in the same boat as nothing touches the pain, she is on naproxen at the moment, uses a tens machine, hot waterborne it helps but doesn't get rid of it. Good luck with appointment, don't be fobbed off with a general gynacologist!
I’m not sure what type of gynecologist I’m seeing on Monday they just referred me to one didn’t even know there was different types but they did suspect endo so I’m hoping it’s a specialist one thank u for replying to my post it really helps not being alone in all this with my daughter x
My symptoms started at 13. I was diagnosed last year at 43. Please, please don't let you and your daughter be fobbed off. I was put on the pill and told my symptoms would improve with age / after a baby. They never improved with age and couldn'tcome off the pill because of the pain but doctors wouldn't take my concerns seriously, I've never had children. I echo everyone above. Make sure they follow the nice pathway. I suggest researching your BSGE endometriosis centre and who the gynecological team are there. She should be treated there if she has suspected severe endo. Also read who at your NHS gynaecology team have a special interest in endo as they will treat those with suspected mild endo. It is imperative your daughter is seen by the right person and not a general gynaecologist. Good luck.
My daughter had her first gynaecologist appointment in November aged 15. Her symptoms are very much like your daughter's and she's been experiencing them for around the same amount of time. It took a long time to get her referred (we were sent round the houses a bit with a General Paediatrics referral and then one to an MSK specialist), but the MSK specialist did at least get her an ultrasound and a referral to the Pain Clinic and, when the ultrasound was inconclusive, an MRI (for which we are awaiting the results). Pain management has been the most challenging aspect - like your daughter nothing seemed to work (even Ponstan) so she has been taking the combined oral contraceptive pill continuously to try to suppress her periods altogether. This hasn't been a complete success as she's had a lot of breakthrough bleeding and, whenever, she does take a break from the pill to try to "reset" things, her symptoms return with a vengeance.
When we saw the gynaecologist I took a written summary of my daughter's history and symptoms. We attended a specialist adolescent gynaecology clinic so the consultant was experienced in working with young people and was very kind. Be prepared to be asked to let the gynaecologist speak to your daughter alone for a bit during the appointment - they do have to ask about sexual activity and understand that it's difficult for teenage girls to be candid in front of their mums!
The gynaecologist was very up front about the difficulty of diagnosing (and treating) endometriosis, and about her reluctance to order a laparoscopy at this stage. She advised us to persist with the pill while we await the results of the MRI. My daughter is also having physiotherapy (ordered by the MSK specialist), which does help a bit with pain management so it may be worth asking for that and a referral to a Pain Clinic.
It is really hard to watch your daughter suffer and, even without the effects of lockdown, the effects of this on her education and social life have been horrendous. Although we are still in what seems to be a very long process of diagnosis and treatment, we have been able to find some things that help make things more manageable - physiotherapy, hot baths (with Epsom Salts), a heat pad and, when the pain is at its worst, paracetamol with codeine does help take the edge off (although this shouldn't be taken for more than a couple of days).
I really hope your daughter's appointment with the gynaecologist goes well and that she gets some help to manage her symptoms.
Just jumping on here to agree with all previous responses.I hope you get some progress really soon! Keep fighting xx
As a side note, there is actually no reason to take a break with the combined pill - Just as the mini pill & injection don't give you a break.
The reason for the "sugar pills" that are put in the pack actually dates back decades, where Catholic families were taught that contraception was wrong and that women should have normal cycles etc.
The sugar pills were put in to appease the pope... but he wasn't happy anyway because it's still contraception and yet, he we are, still popping sugar pills. (Yes, I am serious, look this up. Why is this even still happening? Ask your GP to explain why you should, medically, be having a pill break).
Women's health certainly has been secondary, at best, it's a tough corner to fight in, but you're definitely not alone.
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