Endometriosis/hormone/weight problems NEED HELP

amie_campbell · July 2013

I have had Endometriosis my entire life. In Dec 2012 I had my 3rd surgery for it...this last 2yrs have been the worst & hardest of my life. I had 2 periods a month for a year & all of my skin started burning to the point I wanted to peel it off, I felt like a crazy person due to the hormones that my body was producing, I felt tired and in pain all the time...my entire body hurt and I had numbness in my legs. I put on 25lbs initially then the Dr. put me on birth control so I would only have one period per month, my skin stopped burning immediately and I felt better but I started gaining even more weight, I gained another 35lbs putting me at 194lbs and my breasts grew to a size 36F, I had my 3rd surgery for the Endometriosis in Dec 2012. I feel better but I stopped taking the birth control pill 2months ago to try to lose weight. I have lost only 7.5lbs in 2 months...though I have been really consistent with dieting and working out for 3 weeks. The weight isn't coming off...my boobs went down to a 36DD from a 36F. I was a model all of my life up until 2yrs ago when this started again but this time everything about me changed dramatically...I don't even look like the same person from 2yrs ago. I need to come up with some solutions as to what to do to make the weight come off and faster...I also need a different solution to keep the endometriosis at bay and retard the growth of it because I don't want to have to deal with it again...my body can't take it. I can't take the birth control pill, for the reasons I have stated. Lupron isn't an option as it is too expensive and it makes you have temporary menopause and cuts off hormone production but I feel like we as women need the hormones because they help us to stay and look young. I need information about "Aromatase Inhibitors" & "Endometrial Ablation" as far as are either a good option for me and what the cost is. I also need a solution to lose this weight FAST and to keep it off. I have literally never been overweight or had trouble losing weight in my life...HELP!!!! I don't even recognize myself anymore...does anyone have any advice for me?

asarwe · July 2013

I know this seems like an extreme solution, but what about a hysterectomy? Since you are 43 years old it might be worth considering.

Barring that: Eat the bc pills! Find a formulation that works for you and eat them. It is something your body obviously need to be healthy.

Open your diary so people can give you suggestions. My initial guess would be eating as clean as possible. Drink water, avoid sodium, all that jazz.

Also, 7.5 lbs in a 2 months is perfectly fine as far as weightloss goes. Losing fast is a generally bad idea. Allow the change to be slow. Exercise. Lift heavy weights (someone else can probably give you better advice as far as that goes). Accept the fact that you are not 20 anymore, so your body has changed. It will be more difficult to lose the weight.

Sorry this has happened to you, but now is the time to reevaluate and change your lifestyle to the better. Don't let your illness define you, work around it!

amie_campbell · July 2013

Thanks for your response. Actually endometriosis can still grow throughout the body regardless of having a hysterectomy...I've done my research on it...unfortunately it is not a solution and a friend of mine who had one specifically for that reason, her weight jumped up to 205 and she is taking bioidentical hormones and has gone down to 185 but struggling to lose anymore weight.

I realize I am not 20 but putting on 57.5 lbs in a year is not normal...I've lost the 7.5 and need to lose 50...
I cannot take the birth contol pill...that's what packed on an extra 35lbs quick and made my breasts grow to a size 36F.

Yikes!!! It is such a struggle when our bodies turn against us with disease...
& yes, I am trying so very hard to work around it...
Thought I would reach out to ladies who have had similar problems to see if they have any solutions/advice/answers...

mrslynah · July 2013

I was diagnosed with Stage IV Endo seven years ago. I have had 3 surgeries and been on several hormonal treatments. I know it is hell.
My first advice to you would be to immediately begin researching Endo and diet. My Endo has responded to lap surgeries combined with continuous birth control (like Seasonique) and diet. As you may already know, Endo grows back after surgery. It is not a cure. There is no cure. My Endo grows back within a year of the prior surgery, or 18 months after the birth of a child. Because further surgery is not currently an option for me, I have researched alternative treatments.
For the last 3 months, I have been gluten free, dairy free, almost completely sugar free, and eating the highest quality of meat and vegetables I can find and afford. This month, my cycle came on with ZERO pain to warn me. It is a process, but over the past three months, my pain has gradually decreased in both frequency and intensity.
You are going to want to get your hormones under control before you start beating yourself up about this weight. Treatments for Endo DO cause weight gain. Some treatments basically put you into chemical menopause. Most people have no idea what Endo sufferers experience, what is happening to our insides, or what the treatments themselves can do to us. If you need extra support and info, I am a part of a facebook group called ENDometriosis. There are over 4,000 members, and it has really helped me.
As far as diet, you might start with the Endo Diet.
Best of luck and I'm so sorry you are suffering.

Bekahmardis · July 2013

I was diagnosed with endometriosis after undergoing 15 years of debillitating pain every month. Finally, they figured it out, and realized that it was progesterin that was causing the issues. I had a full hyst plus oophorectomy (I think that's how it's spelled?) and they removed both ovaries...basically everything. I've been on an Estrogen-Only treatment since my surgery at age 33 (I'm 42 now). I gained about 20 pounds over the first couple of years, but I have gotten it back off and I am maintaining now. I have had ZERO issues since then.

For the ablasion: this runs in my family, so both my mother, my sister, and even my aunt have the ablasion done about every 5 years to control their problem and it has worked. It did NOT work with my twin sister and I so we made the decision to have a full hysterectomy.

Everyone is different. Everyone's story and reasoning behind their decisions is different. Talk to your doctor. If you don't like what the doctor says, find a different doctor or get a second opinion.

thisismeraw · July 2013

Thanks for your response. Actually endometriosis can still grow throughout the body regardless of having a hysterectomy...I've done my research on it...unfortunately it is not a solution and a friend of mine who had one specifically for that reason, her weight jumped up to 205 and she is taking bioidentical hormones and has gone down to 185 but struggling to lose anymore weight.

I realize I am not 20 but putting on 57.5 lbs in a year is not normal...I've lost the 7.5 and need to lose 50...
I cannot take the birth contol pill...that's what packed on an extra 35lbs quick and made my breasts grow to a size 36F.

Yikes!!! It is such a struggle when our bodies turn against us with disease...
& yes, I am trying so very hard to work around it...
Thought I would reach out to ladies who have had similar problems to see if they have any solutions/advice/answers...

I would suggest taking those bc pills as they will regulate your hormones. BC won't make you gain fat but will make you gain water weight, can make your chest increase in size, and they can make you feel hungrier thus causing you to eat more. I would keep taking them and keep really close track of your calories in and out. Keep an eye on your sodium... keep it low and make sure you are drinking a lot of water. Fill up on fruits and veggies and lean meats. Never stop taking a medication without speaking with your doctor.

Speak with your doctor. See what they can suggest. If you aren't happy with your doctor seek a second opinion. Please never get medical information from the internet. Some isn't accurate, some will just scare you! Speak with your doctor or a specialist in your issues to see what they think about a hysterectomy. They may believe that it will work and I would think it'd be worth a shot.

teachmom32 · July 2013

I had a hysterectomy last year and it was the best thing I did for my endometriosis. There are no guarantees but you will know when you just can't handle the pain anymore. Also, I take a progesterone cream daily (natural, not progestin) and it has helped immensely. Look up estrogen dominance and see if it fits you. It fit me to a tee and as soon as I started progesterone cream I felt so much better.

amie_campbell · July 2013

Thanks for the advice...can you post a link to the ENDometriosis group page? I can't seem to find it. You can find me by name or email address: amie_campbell@hotmail.com. I had my 3rd surgery last Dec but even so, I have NEVER put on weight like this...yes, I was 25lbs overweight initially but then the birth control pill put on another 35lbs fast and the breasts growing to a size 36F. None of that has has happened to me in the past with the disease but I also never took the pill before. I haven't had any pain since having the surgery nor since I went off the birth control pill 2 months ago. I have emailed my Dr. telling him about all of this, waiting to hear back from him as to what some possible solutions are for my particular situation...Of course I want to keep the endometriosis at bay with whatever means necessary but I am not willing to live my life with size 36F boobs and being 50lbs overweight. I looked at the Endo diet and much of it I was following already naturally as I know what makes me feel good and what doesn't...I have a sensitive stomach/digestion system. Thanks so much for your thoughts and help.

amie_campbell · July 2013

PS: I have had my hormones checked twice before the surgery. Once they told me my testosterone was slightly low and gave me testosterone cream which I couldn't take because it made me feel like I was going to have a heart attack. The other time they told me my hormones were completely normal. Both times they checked my thyroid as well and said it was normal too. I don't understand...something is definitely off and wrong...I put on 60lbs in the course of less than a year and cannot seem to get it off of me...well, now I need to lose 50lbs so I'm down 10lbs.

mrslynah · July 2013

https://www.facebook.com/groups/21070399191/
If this link doesn't work, I'm going to try to send you a request directly from the group. It's a closed group, so admin will have to approve you. No one in your newsfeed will see anything you post.

SO many women there will be able to relate to your experience and offer support and advice.

Endometriosis/hormone/weight problems NEED HELP

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