Symptoms

[Suzanne16]

Hi what can I do to get my doctor to listen about my daughter. Her period today once again she been in constant pain and finding it hard to go to the toilet as she says it's too painful she been going hot n cold and saying her lower tummy been stabbing pains.. She feels sick not eaten had abit of water not normal this stop her from doing anythg. What can I do? She 16 and no one seems to want to knw.

[Alex9]

Suzanne that was me at 16 now 43 not much has changed sadly . As a teenager they told me it was constipation! Another gp told me his daughter has period pain but ' just gets on with it '

As a short term measure I found the contraceptivepill helped me loads in the early days .

I hope some one comes along with some advice on how to be taken seriously. My most recent ultrasound saw endo on my bowel and a blood filled cyst on my ovary but my gp feels no further action needs to be taken 🤨

[Bgrant]

Keep going back to the doctors or go to a different one, I'm 25 and was only diagnosed under two weeks ago by surgery. I was In the same boat as your daughter was in and kept suffering. We have bad periods in our family but no one has ever looked in to it. It took me. To start fainting and have pain all through the month for me to finally speak up for myself I have been lucky as have BUPA health care with work so as soon as I got my refferall letter to the gyne it was a breeze through as I was taken seriously. Tell her to hang in there and we've all been through, hopefully she can find ways of coping ❤️keep Hydrated, peppermint tea, and hot water bottles. Xx

[Suzanne16 in reply to Bgrant]

Thankyou.. And I will.. Just annoying how no-one does take you seriously.. When you knw somethg not right. It awful seeing her in so much pain n I feel helpless. So glad I came across this page. Much appreciated your advice thankyou. Xx

[Suzanne16]

Thankyou that what I was thinking always the same rang 111 last time.. Just the same old thg wait forever and then say go to doctors etc if it not life threatening they say not to go. And we are aware somethg going on it just about getting heard and being in the right place to see. Doctors Monday defo. Thankyou for your reply. Xx

[elisepalmer71]

Hi Suzanne. I would go back. Keep persistenting. One excellent suggestion on this thread, was to take an endo leaflet and say her which of her symptoms match it. I would also take a diary of

1) how many days she has missed from school and how it is affecting her studies

2) how often her periods are, how long they last, whether the pain stays before her period and if it lasts after menstruation as well

3) what pain relief you have tried and how long it gives any relief for (eg, if after 1g paracetamol and 400mg ibuprofens and 1-2 hours s later she is still in pain)

4) how heavy her period is and how often she changes her pads (is it painful for her to insert a tampon)

5) how it has affected her sleeping, concentration, mood, appetite, social life, studies.

6) any other symptoms such as leg pain, headaches, pain on peeing, tiredness, exhaustion, food cravings, fainting or feeling fsint, being or feeling sick.

Go armed with this list and say what your expectations from the visit are.

I would expect the Gp to suggest mefanemic acid for pain relief and Transanemic acid for heavy periods, to reduce flow. I would also expect the suggestion of the pill, if your daughter is open to that? I would also expect to be walking out with a prescription for those medications and a review in 2 months.

If after 2 months things haven’t improved much then you would expect a referral to your local endo specialist.

See a different doc if necessary. Look at my posts. My daughter was diyagrd 14/15 because I have endo and recognized the signs immediately. Gp was fab and now she is 17, on the pill tricyclically, periods controlled, proper pain relief in place. Much better and discharged from endo crntre. Good luck.

If your daughter wants to ask my daughter anything then she can.

Blessings, Elise. X

[Suzanne16 in reply to elisepalmer71]

Thankyou much appreciated all this advice and yes I defo will be going back to the doctors. See a pattern every month unbearable to see her like that not right.. Won't be leaving doctors without nothing in place. Somethg serious needs sorting. Affecting her eating n day to day life. Thankyou for all your support from everyone so glad I came across this page xx

[Hidden in reply to Suzanne16]

Really brilliant advice from elisepalmer71! Great tips on how to quantify the severity of periods and get across how it is affecting her quality of life. The pill and mefanamic or tranexamic acid helped me when I was a teenager. There are stronger options out there but its definitely where she should start. You might get offered an ultrasound too but keep in mind that endo doesn't always show on ultrasounds and to stay persistent if this is the case. My normal ultrasound set me back 4 years because the gps I saw said it was normal and therefore there was nothing wrong with me at all! Meanwhile, I'm so sick I drop out of uni and get 'diagnosed' with CFS/ME before anyone would even consider I have endo.

All the best. xo

[Doggiedogmom1973]

Hi Suzanne16,

Your poor daughter. That was me 10 years ago. I kept going to our local doctor for years, they always gave me pain killers. Then i changed Doctors, on the first visit, I was told I must have endometriosis! Unbelievable. All it took was to change doctors to one 5 minutes away.

Your daughter 100% has endometriosis, by the way you're describing her symptoms. If I were you, change GP's or research to find a excellent Private Specialist gynecologist that specializes in 'deep excision surgery', should you daughter ever end up having surgery, you then know she's have the endometriosis removed the 'golden standard' way. (never ever let your daughter have the endometriosis 'burnt' off. This causes extreme after surgery pain, is should be made illegal).

My absolute MOST import piece of advice would be to read this book: "the doctor will see you now", author Tamer Seckin M.D. He's one of the best endometriosis doctors in the world, and he's got an excellent website too: drseckin.com I brought this book off book depositry. In fact, buy this book for your current GP as well. Its excellent, he explains endometriosis to you very well and the best way to treat it.

Another great book is: "Endometriosis and pelvic pain" by doctor Susan Evans with Deborah Bush QSM.

Books are a seriously cheap price you pay, to educate yourself and diagnose your daughter early, compared to your daughter suffering for years/decades like a lot of woman, and some who end up in a totally un-wished for situation.

Nice helpful mum you are....xoxoxox

[maaf]

Hi Suzanne16, I’ve been then same since that age and I only got taken seriously when I went to a and e with the pain. The dr I saw in a and e referred me and said it should never be that bad that you feel the need to go to hospital. I did feel like I was wasting their time a bit but it helped me in the long run.

[Hannah307]

Hi Suzanne, sorry to hear about your daughter. I think everyone here can relate. It took years of trying with my GP to get him to take me seriously, then by chance I moved to Manchester and Salford Royal were on it so rapidly. I’m 26 and only got my official diagnosis last year, your daughter might have to go through a couple of years of testing before there is clarity. Definitely persevere- a cup of hot water before bed sometimes helps but other than painkillers and hot water bottles, you’re left on the same boat as the rest of us :/ Pelvic inflammatory disease sounds also similar to her symptoms too. Just don’t give up, you’re a mum and you have spot on instincts when it comes to your children’s health ❤️ Hope this helps xx

[JenBella]

That was also me at your daughter's age. GP put me on pill for the cramps and heavy periods plus gave me buscopan for bowel.

Fast forward nearly 20 years, I get married, come off pill and bang, pain starts, heavy period starts and I have now been diagnosed with endometriosis at age 35. I was suffering excruciating pain around ovulation, doc eventually referred me for an ultrasound after treating me for constipation!!!! Found a 8cm X 8cm cyst on my right ovary. Laparoscopy removed this cyst, confirmed endometriosis and blocked fallopian tubes.

Please please get your daughter referred to gynacology. My parents feel sick at how things turned out for me. They blame themselves for not even thinking it could have been this condition. I know there's no cure for this condition but I feel if found early enough surely it can be controlled better. There's also a section in the Daily Record regarding it. People have to realise how serious this condition is and GPs have to be quicker acting when it comes to young females with abdominal issues.

I really hope your daughter's ok xx

[Krithika]

I’m sorry. I suggest not seeing any doctor who doesn’t listen or seem to understand. It delays diagnosis or can put you in the position to accept unhelpful treatment. I went to about 20 doctors (not kidding) and they didn’t take me seriously or offer proper help so then I learned about LAPEX and it changed my life after being diagnosed and treated by an excision specialist. I would see a LAPEX doctor and learn about the treatment and how the doctors can really help your doctor. I would also recommend seeing if going on an anti inflammatory diet helps your daughter. If you have any questions feel free to message me

[Lofty1589]

Hi there. I’m 19 and I started going to the drs because of bad periods and horrible stomach pains etc when I was 13. I was always told it was normal, or it was IBS or something else. It took me 5 years to finally be put on the pill to try and help and took me 6 years for my concerns about endometriosis to finally be listened to.

At this point, I have had my first gynae appointment but had the misfortune of a terrible consultant who was incredibly dismissive so in just under 2 weeks I’ll be seeing a different consultant. I’ve come to the point where I have had constant pain for 2 months now and it is so bad, I am in a constant state of lightheadedness.

The only thing I can recommend is keep pushing for a referral to gynae as they’ll have better and more specific knowledge of this issue. Plus, any way you can push for something to be done will be a massive help. I don’t have the luxury of a mother who believes this is bad enough for her to push for things to be done (we have a badly strained relationship) but I believe they will listen more with your input to explain the effect the symptoms are having on your daughter.

I wish her the best of luck and send plenty of hugs 💜

[Suzanne16 in reply to Lofty1589]

Thank you for replying..i will push for that. Not sure why all the doctors have seen never mention it to me. Feel when have walk away. Well is that it. Anyway hoping to get somethg sorted for her. Really appreciate all your advice. Can't believe how many other people are coming forward saying this was me at 16... Glad have found this page xx thankyou

[Lofty1589]

On Monday, I called 111 for advice and they ended up sending paramedics out to my work to take me to hospital to be seen. The paramedics said that they wouldn’t recommend 111 because they run off a computer system which tends to say go to A&E. The paramedics didn’t take me to hospital either because they believed there would be no point.

If you ever feel the pain is bad enough, it would be better to just go to A&E and not bother with 111 - I’ve gone to A&E in the past and was told to say 111 sent me - the moment I said that, I was disregarded.

Of course, this could be very different dependent on the area, but just a prewarning. It doesn’t give much hope if our paramedics are saying that 111 isn’t good

[Suzanne16 in reply to Lofty1589]

Yes have had that in the past too.. And to get there to wait over 5 hours just to be sent back home.. Which is why am being caution. Now am not too sure as she not eaten anythg since Friday. So I may ring and explain and maybe get her seen. Doctor could then run some test maybe. Just a annoying. If doctors listen we wouldt be here again frustrating. She also deaf and that itself can make it hard work communication xx thankyou x

[Lofty1589 in reply to Suzanne16]

If she feels she is unable to eat, I would recommend perhaps popping down to the hospital. More than anything, because if she is on her period, her energy levels are just going to be depleted dramatically - I know that from experience. I had a week of barely eating thanks to pain and my glucose levels went to 2.5 which is dangerously low. If she can eat little bits of something, I would try for the GP tomorrow or perhaps Tuesday/Wednesday.

If there is trouble already communicating, that could also make it difficult to see how bad she is if she has dropped etc. So, in my opinion (though I am in no way a medical expert) I would probably take her down to A&E and ask for her to be seen. Even if they run tests and send her home, at least you know there is nothing dangerous going on xx

[Suzanne16 in reply to Lofty1589]

Yes have rang them wait for a doctor to get back to me hopefully get her seen. And put it forward test etc thankyou for your kind words really helpful. Very draining just for me seeing her like this.. I be ok once I knw she is thankyou xxx

[Bubblepoppy]

Hello this could also be adenomyosis same symptoms as endometriosis ask about this too I do hope she's sorted out soon I got diagnosed through internal scan 🤞for your daughter.

[Suzanne16 in reply to Bubblepoppy]

Thankyou I will do.. Waiting for doctor to ring me back so I can hopefully get her seen..not wanted anythg to eat since Friday either so not good.. Hopefully after seeing so many comments your all coming with me! Taking all what said on board so thankyou xx

[Sparklyjo]

I was the same hunni. Bled really bad , pain really bad pmt etc. The doc told me to take evening primrose , worth a shot ?? Xxx

[Adhesionist]

I too suffered with crippling period pains from the time I started menstruating at 13 until I was 25. I tried various tablets prescribed by the doctor but the only thing that helped - and it really was like magic - was going on The Pill. I stayed on it, pain-free, for 10 years and it never affected my fertility.

[Forest94]

Hi Suzanne,

You have to be very persistent with the NHS, they work on a 'needs' basis so you have to be most insistent of how debilitating it is for her.

I had terrible periods for years but the last couple of years I became bed bound for 3 days a month and kept being sent away from doctors. After lots of reading I was 99% sure I had endometriosis. Finally told my doctor I wasn't leaving the surgery without being referred to a gynaecologist. Then told the gynaecologist I wasn't leaving without being booked for a laparoscopy (only way to currently diagnose it).

Had lap and for me it diagnosed and removed endometriosis and has helped me so so much.

I would say to read lots of medical info, read forums and be persistent with the NHS. You may not want to go down the surgical route this early or it may be the way for her. Contraceptive methods ie. The pill or coil also help some women. I was also prescribed transanexmic and mefanamic acid (although personally not a fan). Some women monitor their diets and find elimating gluten, dairy, sugar, all of the above etc. Can help.

Good luck. I feel for you and your daughter.

Lots of women say they have 'heavy' and 'painful' periods and it makes women with endometriosis think they are 'normal' when they are in fact suffering to a much more severe degree.

Best wishes!

[Sunflower1968]

Hi my daughter has very similar symptoms and was given a low dose of the contraceptive pill as she is still a virgin so she could only have an external scan. My daughter is 18 this year and has had to try quite a few different pills to find one that suits her. They all come with side effects and risks. But when your child is in so much pain you try anything.

We have both given up sugar and Flour which has helped. It is hard to diagnose Endometriosis without a laparoscopy which I feel is too invasive for my daughter and let’s be honest what can be done Once diagnosed? I do not feel it is my place to make those decisions and my daughter is too young. So for now we are taking each month as it comes and getting through her A levels.

I have severe stage 4 Endometriosis and my gynaecologist advises me it is hereditary.

Maybe ask for your daughter to be seen by a gynaecologist to Look at options? I do personally recommend seeing a female gp and gynaecologist if possible as I have personally found them more empathetic as how can a male ever understand how it feels to be doubled over each and every month in pain. Be prepared to fight as if it is Endometriosis the rescources are so limited and be careful with pain killers too as I have found the side effects really effected both myself and my daughter.

You will read so many supportive stories and advice on here it is a great site.

Endometriosis uk has great information too and offers webinars for recently diagnosed etc.

My daughter uses heat pads I use ice packs my daughter uses buscopan for spasms I use peppermint oil. You just need to find what is right for your daughter as we are all

Unique.

Good luck and I hope that helps xx

[Suzanne16 in reply to Sunflower1968]

Hi that really helpful too thankyou.. And yes I guess I still have alot to learn.. Not ever suffer from anythg like that.. Only thg I get heavy periods that affect my life no pain in my tummy just back pain.. Just brush myself to side.. Busy mum lol my oldest daughter defo keeps me on my toes.. Always somethg going on. Hopefully we will sort it and have a better time next time she on her period. Thankyou for replying. xx