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22 Years Old... Need Direction & Advice
Hello everyone, I have never turned to a forum of any kind for any reason before but I am now because I don't feel like I can really talk to anyone in my personal life about what I'm dealing with every day & have them actually understand.
I am 22 years old. I have had 4 laproscopy's in the past 4 years (the last one being a week ago today) & 3 DNC's (along with the past 3 surgeries - not this most recent surgery) to clean out the endometriosis & everything. I am fine with having the surgeries, they help me year to year with pain.
My main issue is that I have been on birth control since I was 15 years old (to obtain better periods & pain management). I got my first period when I was 11 years old. I am feeling very concerned about my fertility levels, because my body only had 4 years to do its own thing before I started forcing it to do things I wanted it to do with birth control. I will be getting married soon & wanting to have kids within the next 5 years or so & I am so afraid of hearing that my fertility levels are compromised in any way. My history with birth control methods started with the pills, then switched to an IUD & then combined the IUD with the Depo-Provera (my symptoms were bad & my doctor said using two contraceptives could reduce the rate of the endometriosis growth). I also tried the AWFUL Lupron shot, I only made it ONE MONTH because I was so miserable from it. I also got infections from the IUD, so I took that out after about a year & continued with the Depo-Provera & was not that for 3 years. My last Depo-Provera shot was in December & I was supposed to either get the Implanon before my surgery last week or another Depo-Provera shot. My doctor suggested the Implant because I haven't used it yet & the Depo-Provera had made me gain some weight over the years.
I'm at a complete loss. I am not on any type of birth control currently. I don't know what I should do. I talked with my partner about not being on birth control & letting my body do what it does naturally & let everything get back to being natural & putting less hormones in my body. He was totally supportive & said if we get pregnant it will be a blessing & nothing else, because the odds are already kind of against me, until we talked about it last night & he said we need to do something for contraceptive. I hate the idea of condoms because I don't like the idea of latex or anything like that being inside of me. But at the same token, I want my body to cleanse itself right now & figure out what my fertility levels are in a couple months. I want my body to do just BE itself. I've dealt with weight-gain, pain, & everything under the sun associated with endometriosis & birth control hormones. I'm torn between wanting to make my partner happy & wanting to be selfish & not put anything more in my body.
Before surgery, my doctor also discovered that I have PCOS, so along with the birth controls & everything I am also taking Metformin to help my pancreas & insulin levels & hopefully subdue the PCOS as well.
I know this post is long & ramble-y. I'm sorry. I'm just so lost & I need advice from some unfortunately seasoned women with endometriosis.
Thank you all in advance.
I am 22 years old. I have had 4 laproscopy's in the past 4 years (the last one being a week ago today) & 3 DNC's (along with the past 3 surgeries - not this most recent surgery) to clean out the endometriosis & everything. I am fine with having the surgeries, they help me year to year with pain.
My main issue is that I have been on birth control since I was 15 years old (to obtain better periods & pain management). I got my first period when I was 11 years old. I am feeling very concerned about my fertility levels, because my body only had 4 years to do its own thing before I started forcing it to do things I wanted it to do with birth control. I will be getting married soon & wanting to have kids within the next 5 years or so & I am so afraid of hearing that my fertility levels are compromised in any way. My history with birth control methods started with the pills, then switched to an IUD & then combined the IUD with the Depo-Provera (my symptoms were bad & my doctor said using two contraceptives could reduce the rate of the endometriosis growth). I also tried the AWFUL Lupron shot, I only made it ONE MONTH because I was so miserable from it. I also got infections from the IUD, so I took that out after about a year & continued with the Depo-Provera & was not that for 3 years. My last Depo-Provera shot was in December & I was supposed to either get the Implanon before my surgery last week or another Depo-Provera shot. My doctor suggested the Implant because I haven't used it yet & the Depo-Provera had made me gain some weight over the years.
I'm at a complete loss. I am not on any type of birth control currently. I don't know what I should do. I talked with my partner about not being on birth control & letting my body do what it does naturally & let everything get back to being natural & putting less hormones in my body. He was totally supportive & said if we get pregnant it will be a blessing & nothing else, because the odds are already kind of against me, until we talked about it last night & he said we need to do something for contraceptive. I hate the idea of condoms because I don't like the idea of latex or anything like that being inside of me. But at the same token, I want my body to cleanse itself right now & figure out what my fertility levels are in a couple months. I want my body to do just BE itself. I've dealt with weight-gain, pain, & everything under the sun associated with endometriosis & birth control hormones. I'm torn between wanting to make my partner happy & wanting to be selfish & not put anything more in my body.
Before surgery, my doctor also discovered that I have PCOS, so along with the birth controls & everything I am also taking Metformin to help my pancreas & insulin levels & hopefully subdue the PCOS as well.
I know this post is long & ramble-y. I'm sorry. I'm just so lost & I need advice from some unfortunately seasoned women with endometriosis.
Thank you all in advance.
I would like to give you some advice.
Just by hearing how many you have had and you non nonchalantly saying
" I am fine with having the surgeries, they help me year to year with pain" concerns me just a bit.
I am a patient advocate and I have been so for a very long time and have spoken to many top Endo specialist all over the world and women and the one thing I have heard which pains me is the amount of surgeries women are having. I have met some women who have had over 20. Your story as well as theirs makes me really think you need to find an endo specialist because correct me if I am wrong but I don't think yours is and sounds like a regular gyno.
This is where you need to understand that the surgeries you are having could potentially cause you to be infertile later if done by inexperienced surgeons not so much the pill itself. So the surgeries I feel need to be your main concern.
Here is why. Endometriosis GOLD STANDARD treatment is Excision surgery. That is when they use medical scissors to cut out from the root of the disease and removing it all, even microscopic cells. Most gyno's or OBGYN use the laser to remove endo. So think of an ice burg. If excision is being used it gets all the top and all the bottom of it. Laser will only get the surface leaving endometriosis behind causing it to regrow as well as causes a lot more scar tissue regrowth.
Endometriosis also has many faces so it isn;t just the lesions seen that are black but some are clear and and in other forms and to an untrained surgeon this being missed only means it will grow back.
The average amount of surgeries that should be done on someone with endo if done right by a specialist is 1. Sometimes it is more for cases of women like myself who didn't get diagnosed until I was 27 and I had the endo pain starting from my second period at 13. I had deep infiltrating endo in the pelvic wall, rectovaginal endo, bowel endo, bladder. I had 3 surgeries in 8 yrs and the one should never have happened, that is just a long story in itself.
If you would like me to help you find a specialist in your area I would be happy to help you out.
Another fact you should know is that no hormone medication "stops the production of endo growth" this is a myth used by many doctors and surgeons. The only benefit and reason it is used or should be used is to take it continuously to stop your periods and therefore stop the pain. The endo will continue to grow if it wasn't properly removed.
I could never use condoms because I would get a yeast infection from the latex. Never tried to explore outside of that with lambskin ones or anything but I understand what you are saying.
Best thing you need to do right now is gather all your surgical reports, CT scans or ultrasound scans and keep them in a folder so that you have them at all times and continue to do this because there will be times that you need these on hand.
I hope I helped a bit. hugs xoxox
Just by hearing how many you have had and you non nonchalantly saying
" I am fine with having the surgeries, they help me year to year with pain" concerns me just a bit.
I am a patient advocate and I have been so for a very long time and have spoken to many top Endo specialist all over the world and women and the one thing I have heard which pains me is the amount of surgeries women are having. I have met some women who have had over 20. Your story as well as theirs makes me really think you need to find an endo specialist because correct me if I am wrong but I don't think yours is and sounds like a regular gyno.
This is where you need to understand that the surgeries you are having could potentially cause you to be infertile later if done by inexperienced surgeons not so much the pill itself. So the surgeries I feel need to be your main concern.
Here is why. Endometriosis GOLD STANDARD treatment is Excision surgery. That is when they use medical scissors to cut out from the root of the disease and removing it all, even microscopic cells. Most gyno's or OBGYN use the laser to remove endo. So think of an ice burg. If excision is being used it gets all the top and all the bottom of it. Laser will only get the surface leaving endometriosis behind causing it to regrow as well as causes a lot more scar tissue regrowth.
Endometriosis also has many faces so it isn;t just the lesions seen that are black but some are clear and and in other forms and to an untrained surgeon this being missed only means it will grow back.
The average amount of surgeries that should be done on someone with endo if done right by a specialist is 1. Sometimes it is more for cases of women like myself who didn't get diagnosed until I was 27 and I had the endo pain starting from my second period at 13. I had deep infiltrating endo in the pelvic wall, rectovaginal endo, bowel endo, bladder. I had 3 surgeries in 8 yrs and the one should never have happened, that is just a long story in itself.
If you would like me to help you find a specialist in your area I would be happy to help you out.
Another fact you should know is that no hormone medication "stops the production of endo growth" this is a myth used by many doctors and surgeons. The only benefit and reason it is used or should be used is to take it continuously to stop your periods and therefore stop the pain. The endo will continue to grow if it wasn't properly removed.
I could never use condoms because I would get a yeast infection from the latex. Never tried to explore outside of that with lambskin ones or anything but I understand what you are saying.
Best thing you need to do right now is gather all your surgical reports, CT scans or ultrasound scans and keep them in a folder so that you have them at all times and continue to do this because there will be times that you need these on hand.
I hope I helped a bit. hugs xoxox
With all the things you've done and taken, I don't see the big deal with using condoms. If you dislike latex in particular, use natural ones (I think they are made of intestines).
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