Help me please!!!! : Hi I’m in need of... - Endometriosis UK

Endometriosis UK

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Help me please!!!!

SamMichelle profile image
15 Replies

Hi I’m in need of advice. I am cripped with pain worse then any of my labours, but the last time I went to the doctors she told me I was having a “bad period”

I couldn’t move off my bed nor get dressed. my daughter had to help me and my parents carry me to the doctors. I couldn’t stop crying and the minute the doc examined me I cried out in agony and sobbed on the bed for her to turn round and say oh it’s just a bad period!! I told her I’ve always suffered with bad period pain but the last few months it’s gotten worse and I am in constant pain. This month is worse then the last one. I am once again crippled in pain, which no amount of meds are working and don’t know what to do. Going to the docs is a total waste of time but this is now affecting my life! I can’t look after my children as I am bed bound throughout my entire period. Please help me with some advice I actually don’t know how much more of this I can take!!!!

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SamMichelle
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15 Replies
Purplewitch18 profile image
Purplewitch18

Ive been where you are, you need to go back to your dr and demand a laparoscopy. They will refer you to a gynae specialist and they will decide where to go next. Make a list of all your symptoms and keep a record, i use a period tracker app and make notes on there too.

It does take time unless you can afford to go private but at least you will be on your way to getting something done. Ive just had my first op and it took about a year to get there from when i told the dr i wanted one, they did find endometriosis.

My pain was worse than labour too. I changed my diet while i was waiting for treatment and with me that worked to nearly eliminate the pain. I went gluten, dairy and sugar free. Gluten i learned especially inflames the bowl so will aggrivate other problems. Endo also can cause ibs which is excruciating pain.

I still get ill, flu like symptoms and nausea when i get my period but hardly any pain at all anymore.

Please go back to your dr asap and just tell them you want a laparoscopy done and dont take no for an answer. The amount of drs, hospital ones too, that sent me home with period pain 😡, so i know how you feel. Tell them youre not prepared to be fobbed off, you know your body and dont take any shit x

SamMichelle profile image
SamMichelle in reply toPurplewitch18

Thank you so much. I’ve been fobbed off for the past 6 years(on and off) Been back and forth to docs who send me for scans and to gynae. First man I saw was lovely and wanted to help but becuase I wanted another baby I had to do that first then go back and of course I could never get back in to see him so then I saw a women who told me there was nothing wrong, 😡 although I had all these symptoms and a prolapse, I had to wait until I was older. It’s a nightmare!!!! I dred my period every month, cause I know what’s going to happen and spend the whole time in tears cause I can’t get out of bed to even make my children’s breakfast never mind attempt to take them to school. Last months one tipped me over the edge which is why I went back and when your told that it’s just a bad period, you do think maybe your over reacting. Just wish I’d seen my usual doc as she’s have know I wasn’t over reacting. I have a hospital appointment for 14th jan hopefully the new doc I see will actually have some sympathy and do something, cause if this carries on I think I will actaully go mad!!!!

Thank you for your advice though. It’s nice to talk to people who have been there and know exactly what it’s like. I will definitely Take on your advice about the diet side of it and see if that helps. 😊

Purplewitch18 profile image
Purplewitch18 in reply toSamMichelle

Best of luck xx

E-ZEE profile image
E-ZEE

These type of pains have diffrent reason just change your doctor first go some where else for second opinion you can't relay just on one person,wish you all the best hope you get well soon x

marti323 profile image
marti323

I recently came across Nancy’s Nook facebook page. It’s super informative and she has a list of Excision Specialists internationally. Please seek help from one of these doctors and have a laparoscopy to see if endo is causing the pain, which is does sound like endo, and they see endo they will excise/cut it out. With the proper treatment(proper cutting out), recurrence rate is low! In the meantime, I’ve heard that cbd oil has helped a lot of people. Try sitting in a bath of hot water. This helped me tremendously. Don’t drink coffee, or alcohol as those cause inflammation. Look up foods that cause inflammation and those that do not so you can consume more of the anti inflammatory foods.

SamMichelle profile image
SamMichelle in reply tomarti323

Thank you so much

marti323 profile image
marti323 in reply tomarti323

Also I forgot to mention you might want to look into birth control pills to manage the pain the meantime when you’re waiting for treatment.

SamMichelle profile image
SamMichelle in reply tomarti323

Unfortunately I can’t go on the pill due to having a pulmonary embolism

marti323 profile image
marti323 in reply toSamMichelle

Ahhh I'm so sorry

Tillyfloss profile image
Tillyfloss

hi. How are you bearing up? I've been in your shoes and it wasn't till I passed out with the pain it got taken seriously. Having such pain during periods isn't normal, are you diagnosed with endometriosis? Xx

SamMichelle profile image
SamMichelle in reply toTillyfloss

The do. I saw 6 years ago was 99% sure I had it but because I wanted a baby told me to go away and keep trying luckily I fell pregnant not long after as I’d been trying for 18 months. When I went back after having my daughter I saw another doc who wasn’t convinced 🙄 so she sent me away. I didn’t go back until now cause the pain was bad but always manageable but the last 6 months have been pure hell. Last month was the worse my 14 year old had to help me get dressed as I couldn’t move the pain was worse then any of my labours. That doc was a loc and just said a pain period even though the min she examined me I burst into tears as I couldn’t handled the pain. This month the pain has lasted a lot longer then normal I’m on day 6 and is getting me down. As soon as I wake I have to take 4 lots of tablets just to get up and get my girls ready. Even then it doesn’t take it away completely. I am so fed up of this every month!

It’s the it just the worse when no one takes you seriously! You poof thing that must have been awlful for you xx

Tillyfloss profile image
Tillyfloss

where abouts is the pain? My periods became a really problem over 6months but I was on clomid and every doctor we saw just said it was from that. It turned out to be a slow ruptured chocolate cyst but they were very slow to diagnose it.have you had any scans to see if anything can be seen? Xx

SamMichelle profile image
SamMichelle in reply toTillyfloss

I had a scan a few months ago and she kept saying enduro and them something after that. She gave me an internal one as well and my left side hurt more but no cyst. When it’s my period my pain is always stronger over my ovaries more on left then right, down the middle and on my bum. Going for a week or poo is torture. I always cry and then the pain is worse after a wee then I end up stuck on the toilet.

I really wanted another baby but I think I now just want the whole lot out as it’s gone on for to long. I actually can’t take much more x

Lurface profile image
Lurface

I don’t know if this will help: But there are a few supplements you can try:

Serrapeptase: can take a month to feel a difference. I take 120kunits twice a day. Empty stomach. It can make some nauseated in the beginning so some start with just 40k a day and work their way up.

N-acetyl cysteine: (NAC). 500mg 3 times a day. I do 4 days on, 3 days off each week.... it needs to be given in pulses like this, not every day. a study for endo used it 3days on/ 4 off.

SamMichelle profile image
SamMichelle

Thank you for your help. At this moment in time I would try anything. I’ll look them all up unless you know where I can get them. X

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