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Does anyone here suffer from endometriosis?

(25 Posts)
ringaling Mon 28-Nov-16 20:48:34

What symptoms do you have?
I think I have it :-(

rhuhbarb4 Mon 28-Nov-16 20:56:46

Pain everywhere from below my ribson, very irregular bleeding and at very irregular intervals. I had my endometriosis confirmed by the doctor about 2 years ago. What makes you think you have it?

Eyre89 Mon 28-Nov-16 21:01:27

Severe period pain, back pain, painful intercourse, swelling/Bloating , changes to bowel movements,irregular bleeding.

Had it confirmed with a laporoscopy.

Why do you feel you have it? What symptoms are you having?

ringaling Mon 28-Nov-16 21:05:33

I have a lot of gas,used to get constipation.
Also lower back pain a few days before my period.
I'm always bloated too.
Been told it's ibs but I've been thinking its endometriosis.
Terrified I want be able to have kids but too scared to ask for tests etc

ringaling Mon 28-Nov-16 21:06:30

I suffer from anxiety/panic disorder and doctors blame everything on that

gluteustothemaximus Mon 28-Nov-16 21:40:55

Severe period pain, rectal bleeding (during period), very very painful bowel movements, heavy bleeding (the kind where you can't leave the house).

Don't be disheartened if it is endo. I have 3 children, and if anything, my symptoms then improved after. Still get very very heavy periods, but they are less painful.

That's awful that they blame everything on your anxiety. Can you get a more sympathetic gp?

Good luck x

sk1pper Mon 28-Nov-16 22:20:17

I think I have endo, I'm trying to get diagnosed at the moment. I have severely heavy and chronically painful periods, some rectal bleeding during period and am having trouble conceiving. Also my mother and grandmother were diagnosed with it and it is hereditary (hence my suspiscion).

It's worth mentioning that endo has different stages of severity and occurs in different parts of the body. Even people with severe stage endo can still manage to conceive. My mother conceived naturally eventually. I'm treating my body as if it does have endo, I've been on a special endo diet for 2 months now (no wheat, no homogenised milk, organic chicken, lots of fruit and veg, no caffeine or alcohol etc.) and this month I had no chronic pain when AF arrived. If you want to start something similar I can provide some helpful links.

Level75 Mon 28-Nov-16 22:31:59

Grade 4 endo (the worst). Infertility was my only symptom.
I've got a son but it took 6 rounds of IVF.

Tigerstar123 Mon 28-Nov-16 22:45:03

I'm a stage 4 too.
My symptoms included lots of pain including down my leg, problems with bowel movements.
The 'gold standard' to diagnose endo is a laproscopy. I had one and surgeon took away what she could. I need further surgery though as bits of my insides are fused together and it's on my bowel.
It's an awful condition to have.

ringaling Mon 28-Nov-16 22:52:47

Thanks sk1pper that would be great.
I don't really have pain except the first couple of days of start of period but normally painkillers take it away.
I do also suffer with constant itchy vagina and rectum( not sure if that's a symptom)
A few years ago bowel movements on my period were so painful,like a sharp stabbing pain in my bottom..luckily I haven't had that for years now.
My periods are regular every 29 days and I don't get any irregular bleeding
I still think I have it tho.
I sometimes get pain in my left thigh and down my leg in my foot and tingly hand and leg

RvG2014 Tue 29-Nov-16 04:03:14

I have pain daily from my Endo. I'm permanently aware of my left ovary, it pulls, throbs, stabs. Constant lower back pain, bloating, fatigue. I bled, heavily, for 8 weeks before I Was placed into a chemically induced menopause in January at the age of 25. Best thing they've ever done for me after being diagnosed at 22 during surgery..

Eyre89 Tue 29-Nov-16 07:00:35

The only way they would confirm my diagnosis was with a laporoscopy. And endometriosis does have a lot of cross over symptoms with IBS so it can sometimes be misdiagnosed. If your gp would not refer you then could you pay private for your own peace of mind?

It's an awful condition. But I have a son too and managed to conceive naturally. Pregnancy and the year after whilst I breast fed I was symptom free it was bliss.

Some people don't experience any pain from it and it is found during other tests or surgery. Others have constant pain. I always have some form of pain.

I have a friend with health anxiety and I know how hard it is for her. If you can explain to your gp your exact symptoms and reasons why you think you have it see what they say or see a different gp and see if they have a different opinion.

RvG2014 don't know how to highlight sorry. Do you mind if I ask how you are finding the chemically induced menopause? I'm awaiting another referral and think it is going to be one of my options. Sorry to derail the thread.

ringaling Tue 29-Nov-16 08:41:34

My worst symptoms are the constant gas and itchy vagina/bottom
When you look online there is so many thing it could be.
I've got so much gas it's unbelievable

ringaling Tue 29-Nov-16 08:41:59

I must pass wind(sorry for Tmi) every minute all day long

sk1pper Tue 29-Nov-16 11:04:55

Here's a couple of pages I have bookmarked but you may want to do some research of your own. I don't think it's s coincidence that having taken all this on board, the severity of my symptoms have decreased. Though I know my OH thinks I'm mental.

ringaling Tue 29-Nov-16 12:35:47

Thanks sk1pper il take a look
I believe in things like that
Even tho people would also think I was loco too

SummerHopin Tue 29-Nov-16 13:28:09

Is endo identified during an ultrasound does anyone know please?

Eyre89 Tue 29-Nov-16 14:56:07

depends on its location, size etc SummerHopin I had ultrasounds as a first investigation which showed nothing but I then had a laparoscopy which confirmed it.

sk1pper Tue 29-Nov-16 17:13:28

Ultrasound could pick up larger adhesions and scar tissue but it won't pick up all. I'm hoping to get a laparoscopy too to diagnose mine, just got to jump through the hoops first - they aren't too keen on cutting people open unless they've checked the other crap first.

DaisyDanzel Tue 29-Nov-16 17:25:29

I was found to have endometriosis. I sometimes get pain on my right side. Once very badly after sex and was doubled over unable to move. I suspected I might have a cyst, so did my dr. A scan revealed no cyst. So I was referred for a laparoscopy (to my knowledge it's the only way to 100% conform endo)...thinking that it was unlikely that I'd have it. He did find some, a few spots on my left hand side. The (right) side where I get the pain I was found to have adhesions from my appendix to my bowel (from where I had a grumbling appendix as a kid). I was otherwise fine. Adhesions are still there as I'd need another op by a bowel surgeon and probably an appendectomy if I wanted it sorted and I'm not that fussed.

However...he did tell me that endo is a strange beast in that you can have hardly any and get a lot of nasty symptoms..or have it badly and feel nothing at all. Plenty of women diagnosed with endometriosis go on to conceive naturally so try not to worry!

RvG2014 Wed 30-Nov-16 05:59:41

Eyre89 - it has worked wonders for me! I was really dubious about it at first as I'm only 26 and felt it was mucking about with my body too much, but it has given me my life back! I went the longest amount of time without pain killers than I have done in my entire adult life... 9 mths I was good for, until they introduced HRT in September and that knocked me for six - Im actually fearful at the moment that it caused me to ovulate again and I'm pregnant.. But that's another thread... Lol x

Eyre89 Wed 07-Dec-16 15:16:39

Thanks RvG2014 I'm considering it I'm only 27 so I'm worried about the huge list of side effects. I hope it continues to work for you and you're OK if you are/n't pregnant. I'll consider it more now thanks

einalem1984 Sat 11-Feb-17 03:21:35

I have endo- diagnosed with laparoscopy in 2015. You sound like you have lots of the symptoms but the only way it can be diagnosed is with the operation I had. If you do want children you will have to have tests in afraid. We were TTc for 3 years and didn't know it was pointless because I had endometriosis and my left reproductive organs weren't working properly so in the end conceived with IVF.

RufusG Sat 11-Feb-17 09:54:52

Questions to ask your doctor about Endometriosis

You may think that if you become ill you just go the doctor and they give you a drug to take away the illness

What if your Endometriosis is caused by things that you eat, or don't eat ?

Here are some questions to ask your doctors about Endometriosis:

* What causes it ?
* How will looking at it and scraping it help me get better ?
* Could my illness be caused by things that I eat, or don't eat ?
* What can I change about my diet and lifestyle to help my body repair itself ?

These are easy questions to ask, but very difficult for doctors to answer as they know very little about Nutrition.
It may be worth asking them to refer you to a Dietitian or a Nutritional Therapist, as they specialise in Nutrition.
If your doctor won't do this, try a search for BANT and interview 10 local Nutritional Therapists who have had success advising about Endometriosis before choosing which one to work with

Here are 3 well-proven natural ways to reduce the Inflammation that causes the pain of Endometriosis

* Increase your Vitamin D
* Increase your Omega-3
* Reduce your Omega-6

Here are some useful and relevant references:
Vitamin D Wiki
Omega-6/3 Ratio
What to do about Inflammation

Some people have reported that eating specific foods like meat or dairy gives them an instant flare-up
Which foods make your Endometriosis worse and which help ?

ems91 Sat 11-Feb-17 15:17:18

Your poor thing.. I honestly feel for you and the unknown of having it or not is quite daunting.
Endometriosis is awful for me, and it's ruined my life to be honest. I have continual lower back back, inner thigh pain (obturator nerve), pain when pooping, stabbing pains, pains that feel like my reproductive organs have Velcro on them, bloating too...
I have it on my pouch of Douglas, obturator nerve, bladder, left side cavity. I'm struggling to conceive now too even though I've had a multitude of physical and medical treatments. They diagnosed though a laparoscopy... which wasn't too bad to be honest! If you have suspicion that you have it, get a referral to a gynae from your GP as soon as you can..

Some ladies have a lot of Endo and no pain, some have minimal Endo and lots of pain... it varies from person to person. It's the scar tissue that has caused me so much agro.

Hope you get some answers flowers

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