Endo pain- is it normal to have the pain ... - Endometriosis UK

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Endo pain- is it normal to have the pain everyday?

clynch96
clynch96
25 Replies

So recently when looking through a lot of posts about endo, i noticed a lot of people say they get pain when they ovulate, and on their period... however, the pain I have is a constant pain between the pain from my womb, stomach, back, pelvis, top of legs and my abdomen.. I just dont get a break from any of it? Does anyone else experience this? Dont get me wrong, its definitely alot worse on my period but its there every single day too.

I get very very irregular periods though, and im wondering if this is the cause of the everyday pain? For example, i once had my period for 5 months straight and tried countless pills and the only made the pain worse. I then took noresthisterone for one month and its three months later since i took the last pill and theres not been a single drop of blood- which sounds good but isnt healthy. And probably TMI, but when i bleed I BLEED. I can easily go through a maternity pad in an hour. Please tell me im not the only one?

25 Replies
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Hopeful82

Your not the only one, in the past I have been in pain , three weeks out of four. Surgery helps for a while.

* tens machine

* frozen peas

* natural house hold products and washing stuff

* keep away from dairy

*keep away from red meat

*accupunture

*amatriptaline

* decaf tea

*ginger, garlic in foods

* reduce white sugar

You are probebly doing many but just thought I would let you know what has helped me 🍀🍀😘😘

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clynch96
clynch96
in reply to Hopeful82

Thank you so much! I am 22 and have my first laparoscopy on wednesday. Im so nervous that they wont find anything to help me! Ive seen loads of posts of people who thought they had endo then didnt and it scares me!

Thanks for the tips though, i will definitely try them!

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Holleymuzz
Holleymuzz
in reply to clynch96

Hi 👋🏻 I had lap 12 days ago and was going through what you going through as well as the fear of not finding anything although I had already been diagnosed 16mths ago. However then I only had 2 little spots and was told I wouldn’t need more surgery because it just wasn’t that bad!

Fast forward 16mnth I was in pain daily! I mean every single day!

Leading up to the op I was having panic attacks thinking what if it’s not there and the first dr was right and I’m over exaggerating. Even the consultant doing this op put me first on the list because she didn’t think it would take long, simply go in look sow me up.. 3.5 hours later I wake up in recovery being told it was rectovaginal, on my rectum, and all over my pelvic walls. Please don’t stress yourself over the outcome. There is something wrong and if it’s a good surgeon they will find it, if not then you keep going till you find someone who will ! Xx

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clynch96
clynch96
in reply to Holleymuzz

Thank you so much! I think the most annoying part of it is the people who havent experienced this sort of pain think im being dramatic!

My manager in work thinks i can make it back to work the day after my surgery 🙄 She also keeps saying things like oh its not that bad or urgent, do you really think its necessary to get surgery for something so minor? So infuriating! Lets just hope they find something as i dont think i can deal with the unknown anymore 😐

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Holleymuzz
Holleymuzz
in reply to clynch96

I completely, wholeheartedly, absolutely understand. I have everything in my body crossed for you! If you need to chat, in box me. Happy to help or guide in anyway I can x

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Lynne_support
Lynne_supportAdministrator
in reply to clynch96

Hi clynch96

You may find our information sheet for employers useful endometriosis-uk.org/sites/... It has some information about what endometriosis is, plus lots of information about your rights as an employee. I hope you find it helpful

Best wishes

Lynne - Endometriosis UK

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weekari

Hi- I am really interested in this sheet but the link doesn't seem to work.

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Lynne_support
Lynne_supportAdministrator
in reply to weekari

Hi weekari.

Here it is again endometriosis-uk.org/sites/... Please let me know if you are still having trouble with the link

Lynne

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Hayleyeu

I could have written this post myself, my laproscopy is Monday. My pain is so bad this past week and I think it's worse because I'm anxious. So worried both ways, the prospect of living with endo but on the flip side my doctor being right and the pain is all in my head, then where do I go? Trying to remain calm and not worry about things I can't control this weekend. I'm also gutted my laproscopy is in the middle of the school holidays when I should be enjoying days out with my young children!

Reply

Hiya,

Your symptoms are very similar to mine however unfortunately during my surgery nothing was found and I'm still in daily pain, pushing my doctors for additional help. My gynaecologist actually told me they didn't know what it could be after finding nothing and my pain continuing to be daily was scary but my new doctor thinks its deep infultrating and further towards my back/rectum but they didn't check everywhere (I didnt go to an endometriosis specialist which was a mistake.) So I'm hoping I can have another laparoscopy sometime next year.n

I'm now waiting for a pain management clinic appointment to see if they can pinpoint whats going on as my gp won't prescribe me pain meds stronger than paracetamol.

Message me if you'd like to chat and feel free to ask any questions and I will try to answer them.

Good luck with the lap xx

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weekari

I just wanted to say, I had a clear lap 2 years ago and was discharged. I suffered on my own for 2 years but my increasing back/hip pain led me to orthopaedics who did an mri suspecting arthritis. I was found to have severe endo throughout my pelvis and I've just been told I also have a cyst behind my uterus. I've now to get a ct scan to help them plan surgery. I'm being seen my the specialist centre, though I've not actually met them yet.

They've not fully explained it all to me but it's also looking like mine is all at the back. It's bloody painful! I don't have any period related issues.

If I were you, I'd press your Dr for an mri. If it is deep infiltrating, it will likely show. You shouldn't have to suffer.

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SufferingSilently9

Thanks for responding to me :) I have to wait for my pain clinic consultation to ask for further treatment like MRI etc but not sure when I'm going yet unfortunateley.

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applebird

Endo, particularly severe endo, binds tissue together so yes it can cause pain all the time & you're def not the only one. x

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DaisyThoughts

I have pain constantly as you describe and also around to the coccyx area. You are certainly not alone. Wishing you the best of luck on your journey. I'm also trying wearing an Energetix magnet on my knickers over my womb area to try to help with circulation. Only been wearing it a few days but think it may be helpful. So grateful for this forum. Xx

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weekari

Oh I haven't heard of this. I'm always keen to try anything natural. Thanks for sharing this. I hope it helps you. X

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DaisyThoughts

Thanks. I came across it at a body mind and spirit fayre last weekend. It's a German firm and the magnets are guaranteed for 100 years. I thought I would give it a go. They certainly stay in place which was one thing I was unsure about. Wishing you as minimal a pain day as possible. Xx

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weekari

Yes I have daily pain. In fact, I don't have any worse symptoms during my period and can have a relief of some aspects of my pain once it starts. I have been diagnosed with severe endo a few times months ago through an mri with orthopaedics. I've had another mri as ordered by the endo centre and they have now ordered a ct scan. So I'm still waiting to find out what is actually going on inside me. I've been told I have a cyst behind my uterus which would likely cause a lot of pain.

I'm just waiting for surgery so I'll hopefully get a lot of what's causing this pain removed.

I think my experiences and endo is a little less typical.

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Emiilykatex

Hi 👋 I have every symptom you described, and also every day! I was diagnosed via laparoscopy in November last year and have surgery to excise endo on September 3rd.

I also used to have VERY irregular periods however I now have the coil and cerelle pill and now have no periods. Still daily pain though!

Holding on hope for surgery 🙏

Hang on in there, you are not alone!! Xxx

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Artblue

Hi there,

I'm sorry that you are suffering in this way.

I too have constant pain, I am on Yasmin back to back to prevent me from having cycles but the longest I have gone without a bleed is two weeks - that's over the last three years! I have had two laparoscopic procedures and am about to have a third. I have been prescribed naproxen for my pain but have yet to try it.

I really hope you find something that gets you more comfortable, I know how difficult it can be living with daily pain. I have found that cutting refined sugar out of my diet helped a little and that acupuncture can provide temporary relief as well.

Good Luck!!

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Hazel173

Hi, just wanted to say I am the same. I am in constant pain throughout the month but it does get worse just before and during my period. Since my surgery last November I have also being getting very bad fatigue and keep falling asleep randomly at work and with my child (I had never done this before so very strange for me). I was diagnosed with stage 1 endometriosis in various places but my gp doesnt believe I am in pain and says the endo was treated and I dont have it anymore and the symptoms are in my head. Also my periods are very irregular ive not had one for 6 months now (im definitely not pregnant). To me it feels as if I am constantly pre-menstral. Things were bad before but seam to keep getting worse since ive had the sugery. Im honestly at a total loss what to do now. My doctor just keeps saying that painkillers are "street drugs" and I will get addicted.

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clynch96
clynch96
in reply to Hazel173

I.e the always pre-menstral i feel the exact same! I feel like im ALWAYS just about to go into my cycle, its the weirdest feeling ever. I never end up starting my cycle too. I totally feel you on the doctors too. The only thing that helps me is tramadol and they wont give me it cause quote 'they dont want me coming back being a junkie'. Thanks for that doc. I wish docs would feel our pain sometimes. Thanks for replying X

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Alarna

I also get all the same stuff as u every day so i know how ur life mayseem im in hospital at the momment with mine but now its affeting my eating and drink im just sick all the time and carnt lie down too it hurts so now ur not alone x

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Ash24601

I’ve always had pain every day, it just gets worse/more specific with ovulation and periods at the moment. Plus if you have irregular periods who knows what your hormones/cycle is doing on these days. I used the app Clue which has helped me figure out my cycle.

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clynch96

I had my laporoscopy on wednesday and they found endo on my bowel, bladder, kidneys, pelvis, pouch of douglas, womb and fallopian tubes. You name it i had it pretty much 😬 i had a four hour surgery to remove as much as they can and im recovering now. Doctors are finally realising how much pain i was actually in and apologising to me! X

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Hidden
Hidden

Hope your feeling ok today. My pain varies but yes, it can be every day. That's part if the problem for me, I'm never quite sure how it will make me feel on any given day. Best wishes.

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