advice needed : hoping someone with this... - Endometriosis UK

Endometriosis UK

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advice needed

emc0 profile image
emc0
22 Replies

hoping someone with this condition can help me with this one

i’m Age 16 and as i’ve got older my periods have become much worse to points where i’ve nearly passed out and i cannot feel my legs a lot of the time due to painful cramps (i have a very high pain threshold so it really is painful) i also have quite a few symptoms of endometriosis, i’ve gone to the doctors a few times now and they’ve just given me painkillers or tried me on the pill which makes it worse. They say it’s due to my age but i’m a bit worried it isn’t so can someone give me some advice or what they might think is the best thing to do because i’m at loss with it now 😂 anything will do thankyou x

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22 Replies
happyseal profile image
happyseal

To be honest doctors don’t take period pain serious at all. For a long time I’d talk about it just to get pain killers.

Have you spoken to a gynaecologist or only the GP? have you told them that you think is endometriosis? Did they do any test so far or the doctor is literally just ignoring what you’re saying? Another thing is that the GP’s usually avoid doing hormonal tests.

emc0 profile image
emc0 in reply tohappyseal

they’ve done no tests so far just giving me more pills which aren’t doing much, all they say is it’s because of my age and it’s things just “settling in” but it’s got much worse as i’ve got older. i just wouldn’t be sure on how to go about asking for a test or anything because they aren’t really listening to what i’m saying which is getting really annoying aha

happyseal profile image
happyseal in reply toemc0

Yes, as mentioned below, ask for a referral to a gynaecologist. Usually for younger ladies they use contraceptives to slow down endometriosis. But contraception can vary and some may do well with and some won’t.

Independently of what the gynaecologist tells you, you can always try some of the lifestyle and dietary changes for endo. Usually in one to three cycles you should see some differences. These are changes that usually benefit most “female problems” like cutting xenoestrogens, toxins in cosmetics and toiletries, checking your weight, healthy diet, etc.

RunningMum11 profile image
RunningMum11

Hello👋🏻 I know someone of your age that was having the same problems and really heavy periods. It was down to her age and was advised to have the mirena coil. She is so much better now. I am 46yrs and have a mirena coil due to being advised after being diagnosed with endometriosis- it’s the best thing I did.

I would go back to your Gp and explain the pill isn’t working and ask about other options. Or even ask to be referred to a gynaecologist.

Hope you get it sorted, don’t be fobbed off, you have every right to get the correct help. Perhaps your Mum could go with you for support. Xx🥰

emc0 profile image
emc0 in reply toRunningMum11

hiya 😊i’ve not heard of that coil thing before but i’ll look into it, thankyou for the advice! xx

RunningMum11 profile image
RunningMum11 in reply toemc0

Definitely worth talking to your GP about it😊

janetmh profile image
janetmh

I had the same symptoms at that age 10 years ago now, I started using Feminax Ultra which really helped me, when I went back to the doctors age 20 and they asked I told them that was how I was managing it and they confirmed my symptoms seemed to be endo and OK'd me a stronger prescription version of Naproxen which is the painkiller in Feminax Ultra -and only the ultra version thus why it's pricier- having the perscription makes it WAY cheaper and it really helps make the pain more tolerable, to the point I have no pain at all one period out of 3 and the rest MUCH less. Worth a try if you haven't yet maybe.

emc0 profile image
emc0

thankyou for the advice, they’ve prescribed me with naproxen which do help in short term, i’m just getting a lot of problems yet i’m just getting given more painkillers and stuff like that which is annoying, i might retry feminax though

in reply toemc0

Feminax is a brand of naproxen. X

Linley profile image
Linley

I agree with Runningmum11 suggest you reach out to your mum for support tell her how bad things are. I was 15 when my period probs started and I do not know what I would have done without the support of my mum.

SunflowerLife profile image
SunflowerLife

Hello my lovely! I’m 21 and I had the exact same symptoms as you at 15/16... and it’s only now the doctors are taking me serious. The last 5 years I’ve been accused of being pregnant, not eating enough nutrients, period cramps, wrong pill and depression when none of that is true! On 6th July I’m due to have a lap (if you don’t know what this is it is basically where they investigate with a camera in your tummy to see what’s wrong) and they are going to insert the mirena coil to help with pain (this one also stops periods). For me to get this far I had to be extremely pushy with doctors, and I’m not being sexist here but especially male ones as many thought I just had a low pain threshold when this is totally not the case. So, I would really really advise you to be very pushy with doctors, say you need a lap done as at the age of 16 this isn’t normal. Also, if any of your family has anything wrong with them such as endo or cysts, really big up that it could be a family trait! If you need anymore advice or help don’t be shy to pop me a private message, I’d love to help as much as I can as I don’t want you getting to my age and having to deal with this! You want to live your teens and early twenties pain free and having fun🥰😘xxx

emc0 profile image
emc0 in reply toSunflowerLife

hiya, thankyou for this advice i really appreciate it! i’ll definitely try to be more pushy with doctors whenever i next go, i hope your lap goes well also xx

I’m going through a similar thing. I’m 18 and have really painful periods that last nearly 2 weeks. I called the doctors for a second time about the same thing. This time the doctor referred me to gynaecology. But the last time I went the doctor said it’s just my body getting used to my copper iud.

Gingernut74 profile image
Gingernut74

Hi,

I’m now 46 & suffered exactly the same as you are, when I was 15 after many times of going to docs & missing days off school as the painful cramps were too much to bear they advised I go on the pill, not once did any medical professional considered it was endometriosis- just kept saying you just have painful periods!! 😡.

After many many years I was reading an arctic or on endometriosis and realised I have several of the typical symptoms & basically diagnosed myself & asked the doctors to refer me to a gynaecologist- and eventually had a laparoscopy which is the most cases the only way to investigate it was finally diagnosed- some 25 years later, I didn’t know back when I was 15 about endometriosis & am sure I suffered like you from a real early age with this.

Please go and request to be referred even to a endometriosis specialist near you, they made me feel like I was overreacting & couldn’t possibly have endometriosis as I’d had 2 children in my late twenties/early thirties & didn’t have any problems falling pregnant, so trust your instincts & don’t let them fob you off.

I hope you get seem help & relief?, what pain killers do you take & how do you try & help yourself when you are so much pain?.

Angela

emc0 profile image
emc0 in reply toGingernut74

hiya, thankyou for the advice 😊, i’ve been prescribed naproxen which does help the pain but it also makes me very drowsy and i get other side effects, and when the pain gets unbearable i just have to stay sat down and not do anything which is why i’m getting so fed up it all :/

Gingernut74 profile image
Gingernut74 in reply toemc0

Hi, I used to use these feminine heat patches x 2, you can Get in Poundland which u stick on the outside of your knickers & are best the bigger they are, one on Your front & one on your bAck, these did give me some comfort/relief & was like a hot water bottle on either side 6-8 hours so handy if your are away from home most of the day.

I’ve been on a lot of medication from ibuprofen, pregabolin, tramadol, cocodamol & when things are excruciating - Orimorph which is a liquid morphine.

Lots of hot baths, hotties, hot water bottles, it’s a real pain in arse & can be so frustrating & debilitating - just wish I’d of known at your age rather than so much later, I hope you get help soon & Good Luck 👍

Lilac12 profile image
Lilac12

I started getting severe period cramps when i was about 13. It progressively got worse, but was told cramping is normal and was fobbed off. If i ever started my period while at school, Lord help me, they'd never let me go home. They'd expect me to just get on with it, and once i passed out with the pain in school. I used to take a day off school every month my period came on and my bleeding was extremely heavy. I had no idea what endometriosis was so thought what i was going through was something normal. By the time i reached 18 i started to learn how to deal with the pain. For example, as soon as i'd start feeling cramps i'd start my pain relief - paracetamol and naproxen ( i was prescribed feminax max but it really unsettled my stomach). I found if i did this, when my period did come on, the pain wasn't so bad, but it just meant i was going a couple days of taking painkillers back to back. I also carried sticky heat pads that you can stick onto your undies and they used to help too.

Eventually i ended up getting an endometriotic cyst and was referred to a gynaecologist, and only then was i told i might have endometriosis. This was at the age of 26, and age 27 i had surgery that confirmed the diagnosis but the endo had spread everywhere by then - my rectum, cervix and bowel. I honestly believe if i got the right help sooner, it wouldn't have got as bad as it is. Push for a referral. Severe period pain is never normal and should be assessed. x

emc0 profile image
emc0

that sounds awful, mines just getting worse with age which is why i’m worried so yes i’ll definitely try get a referral of some sort, thankyou xx

ourmolly profile image
ourmolly

I was exactly like you. I had painful heavy periods, which got worse. After being put on the pill hoping they would settle down, at 17 years old I was admitted to hospital in an ambulance as I was haemoraging . I then started with rectal bleeding and losing large clots. I ended up with endometriosis, and had a hysterectomy at 28 years old. I still have rectal bleeding at 64 years old. I must state that you need to keep telling your GP how you are suffering till they get you sorted out. Do not keep suffering.

chime6 profile image
chime6

Hi

I am 43 now and had the same as you from age 13. I was also told it was normal and was just put on the pill but had problems with it where the doctors kept trying different pills until I was put on the progesterone only pill (mini pill) when I was 30 years old due to migraines. The progesterone only pill seem to calm and slow the endometriosis down a lot (I still was not diagnosed with endometriosis though).

All the above advice is good but I will add one more bit of advice for you: even though the last thing on your mind at your age is having children I would seriously consider ways of preserving your fertility eg egg freezing because endometriosis in most women will affect your fertility even if you have the pill or merina coil as these just slow it down. I was told at one fertility clinic that the endo had had an adverse affect on my egg quantity and quality which rendered me basically infertile but saying that I also found out I have adenomyosis which is basically endometriosis invading the muscle layer of the uterus. I hope you don't end up with adeno as well but again if you have your eggs frozen at an early age then you could use a surrogate.

I was not diagnosed properly with endo and adeno until I was 41 but by then the endo and the adeno had made me infertile and the adeno made me unable to carry a child even by donor egg IVF. So please if you think you will want children in the future start looking into preserving your fertility now.

All the best x

Renee2 profile image
Renee2 in reply tochime6

Hi Chime,

Very good additional advice re fertility. Take care.

Lynne_support profile image
Lynne_supportPartnerEndometriosis UK

Hi emc0.

I'm sorry that you are struggling with a lot of pain at the moment. You may find some of the information on our website helpful. endometriosis-uk.org/inform....

You may want to go back to your GP, if you do you may find it helps to keep a pain and symptoms diary to show your doctor endometriosis-uk.org/sites/.... Having it written down will help you to remember everything you want to speak to the doctor about.

We do have some information on our website for teenagers, we are currently updating this too provide more information for younger women and girls who have been diagnosed with endometriosis or are concerned that they may have it. endometriosis-uk.org/Inform....

I hope you get some help to manage your pain soon

Best wishes

Lynne - Endometriosis UK

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