Getting checked for Endometrosis.. - Endometriosis UK

Endometriosis UK

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Getting checked for Endometrosis..

MyBodyIsMessedUp profile image
8 Replies

I thought it was dysmenorrhea, there have been times where my period is so painful that I almost faint but at the same time soil myself, while gasping for air at the window.. I can't even walk to the bathroom because of the battle inside. I have always had sugar cravings, and my grandmother had ovarian cancer but battled it, it came back when she was 90 and she died but still a long healthy life.

I have digestive disorders, being tested for gluten intolerance etc, I am trying to make my body a healthier place so the symptoms will be more bearable. I have not been diagnosed yet and having some blood tests first, but I think this endometroisis the answer and it has came up before. I just hope I'm not infertile, I couldn't even imagine going through a pregnancy because of how weak my body is. Last year I got a chest infection and it lasted 3 months, it took my immune system a further 2 to recover.

So, I would like to know some of the symptoms you guys face, apparently this thing is incurable without drastic measures.

Also, because I get so ill while menstruating, the first two days I can't work or do anything and at school or work I feel like others get the impression I am being lazy, but if I had this on paper I guess they could understand, for you ladies does it stop you doing your daily activities?

x

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Beau83 profile image
Beau83

Hello there

Sorry you're going through such a hard time :o( How old are you?

Definitely push to see a gynaecologist because no-one should suffer like this and it does sound like endo. Keep a symptoms & pain diary and take this along with you to show he/she how badly it is effecting your life. You will need an operation called a laparoscopy to confirm whether or not you have endo.

Endometriosis does make your immune system weaker, so you will be more susceptible to illnesses colds etc... and it can make recovering from these harder. You can also have terrible bowel symptoms with endometriosis (Bloating, constipation, gas, diahorrea, cramps/spasms, painful going to the loo, blood in stools and from back passage, shooting pains up bum) this ofen gets dismissed as IBS.

I would seek hormonal treatment for your periods asap, as if they can stop you from having periods this will at least take away your period-related pain/ bleeding issues. There are several hormonal treatments that can stop your periods (or at least make them a lot lighter and less painful) like the pill, the implant, depo provera injection, the mirena coil. I had to try all of those over many years but finally found that the mirena coil stopped my periods completely (havent had a period in over 2 years!).

There are lots of things you can do if you are diagnosed with endo: hormone treatment, surgical removal, painkillers, diet etc... and the correct combination of all those things should make things much better for you.

Take care x

MyBodyIsMessedUp profile image
MyBodyIsMessedUp in reply to Beau83

Hiya!

I just turned 21. Yes, do you think endo affects you even when you are not menstruating? like two/three weeks before, I've always had a pale weak look. I read that with laparoscopy there are risks of damaging the organs further and that it is quite a delicate procedure of looking inside. Yes I do get those shooting pains up the bum! I felt like nobody else did, it's like the whole bottom area hurts.

Yes, I recently had a break up and I swear it was because of my hormones. :( I should of just shut up but I can't go back and change his mind. I just want to be a positive, calm and stress free girl with a healthy life style, I am very healthy but well... this Endometrosis thing will need to be checked out!

Thank you for your help!

Beau83 was very informative. I would also add chronic fatigue. If you suddenly feel like you need to sleep or feel very achy all over. I am following a gluten free diet even though I do not have cealiac disease. This is helping a lot with the pain.

Good luck to you. X

LenaDucce profile image
LenaDucce

Hi - I have been there. I have had terribly painful periods since I was 14. I have very intense spasms, diarrhea, feeling bloated. Very sensitive to temperature, cold air conditioning is disasterous for me. When it was very intense, I was also vomiting, particularly when doing an intense physical effort during my periods: since 16, I have always had a medical note for my sport teacher on my first day of periods.

I have been diagnosed at 27 as it got worse: I would miss work systematically on the 4 first days of my periods. Pill did not improve in my case. After a year trying to find different solution, I have done a laparoscopy: from 4 days reduced to 1 painful day where I could still work. When it is painful, I also take Ponstan (mefenamic acid).

Make sure to go to a gynea. It helps a lot to know exactly what it is and . And stay positive! It is normal to be a bit desperate and scared in the beginning as you hear words "incurable" or "infertility". Whatever happens, life goes on! You just have to adapt yourself and it will get better. Seek comfort talking about it with friends and family that will support you. Don't worry about what people think at work, think about yourself and what makes you feel better. Set your own objective and if they think you are lazy prove them work with quality work and not quantity!

Be strong! Think PO-SI-TI-VE!

MyBodyIsMessedUp profile image
MyBodyIsMessedUp in reply to LenaDucce

I know I HATE getting bloated easily because I end up not eating enough and just have a scrawny childlike body. But if you are bloated and try to eat more it just makes you feel ill! I am also very sensitive to temperature, it makes me scared to go abroad to a hot climate because I know how ill I could get while doing an outside activity, it is quite dangerous. I get cold easily too, my P.E teacher used to tell me working out while being on your period is good for it, but I would just get breathless and wheezy. Do you think the laparascopy has improved any part of your well being?

LadyPenelope profile image
LadyPenelope

My heart really goes out to you. I can completely understand and relate to how you feel. My pains started with my period when I was only 12 years and it just got worse. I currently have stage 4 endo and my life is completely changed. I'm not the strong person I used to be. My immunity is weak and I catch everything going. I'm currently recovering from bowel surgery related to endo and each day is a battle. Please forget about what people will say or think, nothing you do will stop them. Concentrate on YOU and how you can make yourself better. Im 35, divorced and have no children, but Im moving on in life as best as I can. Just take one day at a time. I really wish you all the best.

MyBodyIsMessedUp profile image
MyBodyIsMessedUp in reply to LadyPenelope

Wow, I did not know there are different stages. I know how it feels not to be strong, to just feel fragile... and people tell you it's all in your frame of mind, when in fact, it's just your mind reacting to your weak body. I have been changing my life style which I know is doing me good. I know what you mean about forgetting what people think, I told my dad information I found out about refined sugar and he was like "you've been reading that stuff again!!" People react like I am a hypochondriac, when in fact I am not, I have just become self aware and educating myself about my body and how I treat it. It is crucial, particularly people like us with weak immune systems, realize the dangers of substances like refined sugar. I think people react a certain way because they are in denial.. it's like people who eat organic and use eco cleaners, they are seen as neurotic, some might be.. but in actual fact it's just that they are choosing to live a purer lifestyle. The world needs more strength! I am just glad I am making physical and emotional changes to myself at 21, before it's too late.. your health is your number one priority to survive.

I heard it was bowel cancer my grandmother had but not ovarian, so there is a link? Did you make any lifestyle changes to your diet and working out routine? I think Endo seems like a learning disorder, you have to try 3 times as harder as others..but with eating well and keeping fit, because your body does not adapt as well. I can't stand the ignorance of men who think women get ratty on purpose, never mind us who get it bad, plus the build up to it.. this is a strength of women not a weakness, to be compassionate towards each other! :) Don't think at 35 you are shelved, this is still a youthful age, I know you might not feel this way and the surgery has weakened you, but hopefully it will change your body for the best!

LenaDucce profile image
LenaDucce

On my side, the lap improved my well-being better than pill, i don't know which stage it was but I thank god every day it was not on the ovaries and not stuck to the bowel as they initially thought.

However, afte the lap, main disappointment is that the pain does not completely disappear but it lasts less and it is less intense. I share your frustration. Rare are the people who understand. It took me a while but I got used to prioritize whatever make me feel better: if it is not doing sports, then I won't; if I need to work from home because I would be better with my laptop and my warm blanket, I will fight to negotiate it. Listen to your body.

LadyPenelope I totally agree with you and I cannot hardly imagine what you have been through. I admire all women on this forum hanging in there, being strong, advising and supporting other women.

Best of luck all!

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