It’s so hard explaining to people 🙄 - Endometriosis UK

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It’s so hard explaining to people 🙄

princessk09 profile image
30 Replies

I give up! I just want this pain to go away 😫

My parents don’t understand the pain I’m in when it’s my period and a few days before. They think I’m lying to get out of doing stuff and if I want to go lie in bed, I get in trouble.

My dad is annoyed at me as it’s getting in the way of sports practice and going gym but like it’s not my fault. I’ve tried codeine and it’s not helping at all, the pill hasn’t helped with it.

My pain is the same and the flow is back to being heavy (sorry tmi) after a few months of being regular and light. It’s gone the opposite way again.

Sorry for the rant but I’m sick of waiting for the nhs to give me a second referral even though I’m on the urgent list.

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30 Replies
Joely21 profile image
Joely21

Hi there,

I feel for you I really do, it’s really hard to get people to understand who haven’t been there themselves. Maybe get them to come in this forum and read things or ask them to research it and see what they get from it? I know what you mean about not getting anywhere I’m currently in the same position I suggest rest plenty of it hot water bottles and a portable tens machine, keep going back to your Gp keep on pushing and then they will hopefully see it all on record and hopefully it will help.

Take care I hope you don’t suffer too much xxx

princessk09 profile image
princessk09 in reply toJoely21

Thank you

My dad keeps saying I’m feeling sorry for myself when I’m not, it’s just I’m in a lot of pain

Lulububs profile image
Lulububs in reply toprincessk09

Hey

It must b horrid when parents dont understand, did ur mum not suffer? Luckily im in a family of sufferers so they understand.

If ur pretty regular and know when it coming start taking ibuprofen before it will stop the inflammation then start taking cocodamol! Get to the pain before the pain gets to u.

Also get in touch with dr and get some transexamic acid tablets, they are good i have then u start as soon as u bleed they will kind of stop blood clots and bleed being so heavy!

Thats survival class for period!

Hot water bottles!

Hi Katie

So sorry to hear of your parents lack of understanding. Not at all helpful for you just now.

Wondered if you had ever tried ibuprofen?

The problem with Cocodamol is that is causes dry stools and constipation. It can actually stop bowels moving especially the higher doses. So you need to take Lactulose medicine 15ml x twice a day while on cocodamols and drink loads of water and/or decaf tea.

Try 400mg of Ibuprofen x 3 times a day and see if that helps. Must be taken with or after food or milk & biscuit. It can also be taken with paracetamol or cocodamol. So, ideally - 2 paracetamol, something to eat, then 2 x 200mg Ibuprofen. Get the cheapest own brand Ibuprofen from supermarkets. Ignore fancy names, no need to pay high prices.

Hope you get through the coming days ok. I remember my periods being a nightmare sometimes. Then, on one occassion when I'd been presribed regular Ibuprofen after a straining injury, my period took me by surprise! No PMT and no pain!!

If they don't like you going for a lie down, try curling up on the settee with a hot water bottle and a throw/ blanket. Hopefully they will get the message. Another thing that might help is - put a towel in the tumble dryer for 5 - 10 minutes till hot. Wrap around neck snd shoulders and get comfy on settee or armchair. This will help relieve tension / stress caused by pain and unhelpful people! xx

God Bless

princessk09 profile image
princessk09 in reply toMary-intussuception

My parents say I’m feeling sorry for myself when it’s my period. When I’m not, it’s just the pain is awful. Even my boyfriend is more thoughtful and worried about me as my period causes me not to eat a lot due to nausea.

But this month has hit me hard, I’m vomiting and a load of other horrible stuff. I’ve tried ibuprofen and it’s doesn’t work. I’ve tried mefenamic acid as well.

It’s like painkillers don’t work for me 🙄

My referral came today and I have to wait till January 2018!

Mary-intussuception profile image
Mary-intussuception in reply toprincessk09

Then you need to get straight back to GP. Report the vomitting and everything. Say you need help now.

Ask GP to contact someone about January referal as you can't go on like this.

Are your bowels working OK. If you have taken codeine for more than a day that it could have caused constipation which can cause vomitting.

Have you tried sipping warm water with a little Bicarbonate of soda?

princessk09 profile image
princessk09 in reply toMary-intussuception

I’ve not taken any codeine in like a week. And the vomiting and Diarrhea only started yesterday which was the first day of my period. (Sorry if tmi haha)

Mary-intussuception profile image
Mary-intussuception in reply toprincessk09

No, not tmi at all!

So you either have a gastric bug or food poisoning. Which is all you need as well as your period!

I suppose you know to drink plenty liquids to keep hydrated. Can your boyfriend pop to Tescos for you? When this happens to me I buy Fox's Glacier Mints or Mint Imperials. Any that are made with glucose and peppermint oil. Also Fox's Glacier Fruits. You could buy some Blackcurrant Dioralyte sachets, or Tescos own brand rehydration sachets are cheaper. The sweets will help keep you nourished till you start back on bland food or just take the rehydration drinks.

You really need to rest in bed till you are over this, so no-one can deny you a lie down now! Let's hope it's not contagious!

If you get worse / more severe symptoms like severe abdominal pain and d & v increase in frequency you may have to call doctor. You could do that now before 6pm. Otherwise it will be Out-of-hours GP from 6.30 or 7pm onwards.

If you can't get any sweets or rehydration sachets then keep sipping water, flat Pepsi is good (not diet).

If you can drink it, you could add a little sugar to water or preferably sugar and a little salt.

I imagine all you want just now is bed with a hot water bottle. xx

princessk09 profile image
princessk09 in reply toMary-intussuception

I don’t think it’s food poisoning as I always suffer with these symptoms each month a few days before my period and during it. However, the vomiting just started yesterday and I haven’t eaten much in the last few days.

My boyfriend lives too far away haha it’s a long distance relationship which is horrible rn as I just wanna cuddle

Mary-intussuception profile image
Mary-intussuception in reply toprincessk09

Katie, I have just looked up mefanamic acid - and common side effecs are:

nausea, upset stomach, vomiting, diarrhoea, cramps . . .

princessk09 profile image
princessk09 in reply toMary-intussuception

I haven’t taken it in months

Mary-intussuception profile image
Mary-intussuception in reply toprincessk09

Did you get the Vomitting & Diarrhoea wih your period before you started taking it?

princessk09 profile image
princessk09 in reply toMary-intussuception

Nope, it’s only started the last two months

Mary-intussuception profile image
Mary-intussuception in reply toprincessk09

So, it could be a side effect.

They are only for mild to moderate pain anyway.

I've never tried them.

Personally I now only ever take Paracetamol and Ibuprofen combination, staring with 1x 200mg Ibuprofen and up to 3. And only occasionally for severe pain. This is because I can no longer take codeine due to bowel conditions. I cannot risk getting constipation because I don't have normal bowel function now.

High doses of cocodamol & Ibuprofen were given to my husband following surgery for very severe pain. However I think you might need to take Fybogel Orange sachets as well as Lactulose and lots of water with these.

If you've taken codeine in the past without Lactulose medicine and lots water you could have retained stool somewhere along the way. You could have vomitting & Diarrhoea with this.

Whatever the cause, I would see GP Monday, to report these symptoms of last 2 months and query January appointment. Ask GP to help you now.

Meanwhile remember that you need some nourishment now. Tell GP you cannot eat properly.xx

Anri profile image
Anri in reply toMary-intussuception

It seems to me you are not listening to her symptoms. If a drug like this has been cut out months ago, it will not affect anymore due to pure chemical laws. Diarrhea and vomiting are, however, symptoms of pain and very likely to occur with endo. My whole gastrointestinal system is all messed up during the flow as well, and if the cramps get bad, vomiting will come. However you should not take ibuprofein to ease it before the GP, since ibuprofen is not good at all for your stomach lining, so if there is something wrong with it you will only make it worse. Take paracetamol 3x500 per day with some probiotics on days with pain until your GP tells you better. xx

princessk09 profile image
princessk09 in reply toAnri

Yeah, these symptoms only occur around my period although I experience nausea randomly throughout the month

Mary-intussuception profile image
Mary-intussuception in reply toprincessk09

Hi again Katie

Just a thought -

You do know that you must not take mefanamic acid, ibuprofen nor any NSAIDS while you have Vomitting and/or Diarrhoea don't you? Nor when you are unable to eat. NSAIDS can cause bleeding from the stomach, duodenum or small intestine.

I was thinking about what you said about vomitting and other horrible stuff? Have you vommited any 'black water'. As this could be a sign of a bleed. If you are still having these symptoms and feeling very poorly and in pain would you consider calling Out-of-hours GP or 111 over the weekend. If you bring up or pass blood (which may not be noticeable as it has the appearance of coffee grains) then please definitely call 111 for advice or Out-of-hours GP.

If not please see GP on Monday.

If waiting till Monday then try to only take 2 x Paracetamol for pain with at least 4 hours between each dose and no more than four times in any 24 hour period.

Hopefully GP will upgrade your referal to Urgent and help you meanwhile.xx

JackieBo profile image
JackieBo in reply toMary-intussuception

Yeah, I don't think her issues are due to any medicine or food poisoning or a stomach bug. I have had diarrhoea and nausea/vomiting on my period since I was a teenager (early 30's now). Turns out, these were all early signs of something wrong, which I now know to be Endo.

Loose stool and nausea are REALLY common during a woman's period. The loose stool is from hormones flooding the body and the nausea and vomiting are obvious pain symptoms.

I take cyclizine for my nausea and I'm now on tramadol for the pain as codeine wasn't enough. I'd ask your doctor about better pain relief and an anti-nausea med to hold you over until you get to a specialist. Best of luck!

Nuvs profile image
Nuvs

Hello! I'm sorry for what you are going through. I had my first cycle at age 14, it was a total nightmare for at least 4 years.

Every month I had to be taken to Emergencies for a injection or drops cause normal pills didn't work for me. I fainted quiet often and if it was school day I skyped school at least the first two days of my cycle.

I had an ultrasound and was diagnosed with Endometriosis. My doctor say it would go away and it did but get a second opinion, you may find a doctor that can help you. I'm 39 now, there must be more research about and better solutions than just taking the pain.

Good luck!

Ecb20201298 profile image
Ecb20201298 in reply toNuvs

How did it go away on it’s own? How do you manage it now?

Nuvs profile image
Nuvs in reply toEcb20201298

It started to go away, less pain over the years and when I since I had my son at 25 the pain was bearable. I do not recommend you to wait or have a baby! ☺ I am sure they can help you, if your GP is not helping, find a new one.

I ended up here trying to find a forum with people suffering of fibroids. That's my new issue.

Take care!

Kayjd1988 profile image
Kayjd1988

I completely understand I started my period heavily in year 5 of primary school. I have almost constantly had problems. After having a miscarriage I never stopped my period for the last 7 years. My parents never understood the pain the cramps feeling like I was having my insides ripped out from within. My husband at the time couldn’t understand either the marriage broke down. But my partner I am with now doesn’t mind if I am bleeding all the time we have a normal relationship. He was given the info when he expressed and interest in taking on a date, he researched it understands the facts the medicine the procedures and is so supportive. So I would give them the facts give them links to websites where that can see what it is that you are suffering with. Or if it helps maybe log them into here and they can ask a few people some questions on what they see and what it is actually like from a outside point of view?

princessk09 profile image
princessk09 in reply toKayjd1988

My boyfriend worries more about me than my parents do haha. My parents don’t put themselves in other peoples shoes and see things a different way. My dad just says I’m feeling sorry for myself and gets annoyed as I can’t do anything.

They think I’m making it up most of the time because the ultrasound came back negative but I’m at the hospital on the 21st December

Lulububs profile image
Lulububs in reply toprincessk09

Well thats men for ya!! They think there dying when they got a cold but cant imagine what childbirth or periods are like!

I always said id love one to experience a period for a whole weeks lets see how they would cope

Horlah profile image
Horlah in reply toprincessk09

Hello.....can I please ask how old you are? I understand your position and quite relate with your family's position over your condition. I was diagnosed with Stage 4 endo after suffering for ten years and getting ignored( I started contemplating suicide at a point). Surgery time, a laparotomy reveals a cyst bigger than my head🤗😀😀😀, damaged Fallopian tubes and a damaged ovary and muddled up internal organs.....all as a result of severe adhesions caused by endo. My mum almost died from regret of ignoring my painful periods and my dad could never forgive himself.......

My point is please try focus on treating the cause of your pain. I had all the symptoms you described in your thread above but my conditioned had already worsened.

1.... Endometriosis cannot really be diagnosed with ultrasound....only a laparoscopy can.

2.... Try make efforts to stop your periods for now before you see a proper consultant..i.e. Use Mirena....etc( it worked for me for a while)

Shake up your parents as much as you can and try get them to get you to go private if possible.

I only forgave my parents because they prayed endlessly until I had my son, now 7yrs old.

PERIOD PAINS ARE TORTURE BUT CHECK THE CAUSE. I HOPE AND PRAY YOU GET HELP SOON.

Try and GUM clinic for contraceptives, doesn't have to be your GP.

princessk09 profile image
princessk09 in reply toHorlah

I’m 18, I’ve tried the pill and it didn’t help, codiene, mefenamic acid and tramadol don’t help the pain.

I’m at the hospital on the 21st December. Thing is I don’t have heavy long periods so now I’m like maybe it’s endo maybe it’s not

Ugne profile image
Ugne

Hi princessk09,

Sorry to hear you're not being understood about your pain.

Feel free to use Endometriosis UK helpline 0808 808 2227, which is open on most days; the women on the helpline have all had endometriosis themselves and are very willing to listen. Or consider joining one of support groups: endometriosis-uk.org/suppor...

You are not alone, so please make use of this helpline and/or support groups..

Hope this helps, take care x

Ugne

princessk09 profile image
princessk09 in reply toUgne

I haven’t been diagnosed yet but I have a lot of the signs

Bella_12 profile image
Bella_12

I feel your pain! The last few months I have started getting bad period pains, to the point where I am going to pass out, and feel like I’m going to throw up. I have to go sit in the bathroom by myself until it passes. I went for a scan a few weeks ago and am now waiting for my consultant appointment! NHS are so slow and meanwhile I’m dreading getting my period and the pain that comes with it! Hope you get your appointment soon x

princessk09 profile image
princessk09 in reply toBella_12

My appointment is now on the 21st December so hopefully I see a good gynae unlike the first one. The NHS are very slow and I was put on the urgent list.

My periods aren’t heavy like people with endo have but I have bad pains and other signs. And blood in my wee (idk if this is normal)

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