Newbie

[Butterflydream]

Hi ladies, I’m new to all of this. I’ve been having painful periods since I first started, been back & forth to the doctors for years. In 2012 I started to get different pains with my period like sciatica in my right leg & pelvis pain. I thought the pelvis pain was due to exercise. During the time I was on the pill & had a break monthly, the pain got worse so I was told by the doctor I could take 2 packs back to back. It was a lot easier to face 6 periods a year than 12 which I thought was great, little did I know this was just masking the pain & not solving it as I just wanted pain relief & the doctors would only tell me it’s just painful periods. Fast forward to 2018 I came off the pill as I wanted to have a baby and get my body ready, the first 3 months we’re fine & then the pain got progressively worse every period. 2 scans later and gynaecologist appointments the only 2 diagnosis they gave me were primary dysmenorrhea or endometriosis & that I was to come back in 7 months. As I wanted to get pregnant the only options we’re pain killers and continued pain or to go back on the pill. I chose to have a break for 2 months on the pill as I just had enough, now I’ve come back off it I’ve had the worst period ever. Extremely bad pains across my lower stomach, felt like I had been cut open. Loss of appetite for 4 days. Sickness, constipation, fatigue, constant pain day & night & bleeding for 7 days. I went back to the doctor as I needed stronger pain killers & the doctor said it now sounds like my symptoms are more like endometriosis. My next gynaecologist appointment is in March, has anyone else experienced pains like this? Sorry for the long story

[Mparstoy]

Hi! I am sorry you are experiencing all these problems. The symptoms you are having were very similar to mine. I will not speak from a place of scientist or doctor, just from what I have read. It has been said that more and more women have Endo because of all the hormones we take. Not only the birth control pills, but the synthetic hormones we consume in our food, found in make up, shampoo, creams, etc. Endo is said to be affected by an estrogen dominance over progesterone. For this reason, I have read that we should not take birth control pills and get on an Endo diet. This also means looking carefully at the products you buy. You can find information on the internet about Endo diets. It is very important that an Endo specialist advise you. Not just a gyno, they do not know what they do not know.

Surgery is only useful when the the surgeon is a specialist too. At this moment, the only way to diagnose Endo is through a lap. But only a specialist knows how to thoroughly remove it.

I wish you all the best!!!

With kindness

Margarita

[Butterflydream in reply to Mparstoy]

Hi Margarita, thank you so much for taking the time to reply. I really appreciate it. I definitely want to do more research on it, & I’m not surprised that it’s probably to do with the pill & food we eat. I want to try this Endo diet, anything that helps will be great. Glad I have time over Christmas to do some research & I will put it in to plan in the new year. 2020 will be a year of health & understanding my body & hopefully a baby too. The thing that I am actually surprised about is how common it actually is. I didn’t even know it was a thing till last year. I’ve always tried to research my symptoms but never came across this, or it might be the fact that my symptoms have now changed quite a bit. I will try to find an Endo specialist, not really sure where to look. Have you tried the Endo diet, has anything else worked for you?

[Mparstoy in reply to Butterflydream]

Hi! My story is very similar as well, as I think most woman with Endo, in terms of not even knowing that such a common disease even existed. This is a big part of the problem. If women were to be diagnosed from an early age, I think we would aleviate so much suffering. I had Endo for 27 years before I was diagnosed. I heard about Endo and Adeno two years ago from a doctor that thought I had it. I spent 2 years trying to treat it with alternative methods. I was on the Endo diet and got rid of most products that could have synthetic estrogen. I wanted to avoid surgery because I had read that it was counterproduvtive. It is agreed by most in the medical community that Endo has no cure.

the rest of my story it's a little different than most. My health by the beginning of this year was unsustainable and so my mother convinced me to travel to the US (I live in Ecuador) to get the Lap with a reknown Endo surgeon specialist. He understands Endo a little bit different from most. His success rate is 85% of his patients don't ever have problems with Endo again. He is convinced that if you can get all the Endo out, it will not grow back. I had my surgery in July of this year. It was hard. It took 4 months to feel normal and good again. Now I have never felt so good with my cycle. All the symptoms I had due to Endo disappeared. At this point, I am putting my faith in this doctor that he is right, that the Endo is not going to grow back. Only time will tell.

All I can recommend women is to find an expert Endo surgeon. It is the only way the surgery is worth it. (If you can go private and find one, that would be amazing)

In my case, I found comfort in doing my research to find out more about the disease. It made me feel empowered. I know that is not for everyone.

I have not answered your question about the Endo diet. My doctor recommends it. Some women speak very fondly of it. I was in such a bad place, I don't know if it really helped. Maybe I would have been worse off if I hadn't. I'm sorry I can't give you a better answer. What I do know is that the diet really helped me pre op and during the recuperation process. Having a clean body is always a good thing.

I am not sure any of this helped, but if you have any questions, I am here.

With kindness