My body is drying out

I am not even sure where to start when it comes to my body drying out. I want to say it started long before my first surgery for Endometriosis in 2007. I have never really told this to anyone before but I am about to and I feel really weird about it.

My vaginal area has always been dry and I mean really dry to the point that even my clitoris was dry. It would be painful to even walk when it was flaring up. I remember seeing a gynecologist about it and they told me they couldn't find anything wrong. This pain lasted almost 10 yrs then suddenly disappeared. Having sex would be so painful because of how dry I was especially if the person I was with would try to stimulate my clitoris.  Sometimes I would grin and bare it and I mean even doing that was horrifically painful but how could they understand this pain? I never told anyone because it was shameful to me and also because even when I was diagnosed with Endometriosis I didn't hear one person talk about this so I assumed it was a problem that not many other people had. Usually this pain with be more severe with my periods and I chalked it up to it being from me wearing tampons and it drying me out everywhere else. I would just use Vaseline and that would help.

About a month after my hysterectomy I started to develop this really weird feeling in my mouth. It was as if I had burned my tongue on something and it felt burnt all day long. The only way to make the pain subside would be to eat or sleep. I am now 4 years post hyster and the pain and dryness I have is just unbelievable. I can only equate it to my hyster or jaw because I have TMJ as well but no one can give me answers so I have to assume it is from my surgery.

The burning that I feel has a name and its called "burning mouth syndrome" it is brought on by trauma, post menopause and various other things and when I brought this up to my doctor she said that had nothing to do with my hysterectomy when it clearly states that it is possible. That is the reason I left that doctor. I have had so many issues over the last two years and she did nothing but make it worse for me. I had a complete mental breakdown and she said to me "what would make you feel you had a nervous breakdown" I was like "did you not see me in here almost once a week for 5 months straight out of my mind crying and not able to handle anything in severe crisis?" So needless to say I am confident I am in the right hands now.

The burning mouth has been here for a while and around the end of 2017 as well as the chronic canker sores and the mouth dryness came on full force. I thought it might have been the meds I was on that time or because they all cause dry mouth especially the Wellbutrin. I was using Biotene mouth wash, saliva inducing gum but it progressively just kept getting worse. At one point I thought maybe it had something to do with my jaw because I was getting nerve blocks put in my jaw as well as Botox and in February of this year had jaw surgery so I chalked it up to that causing it.

When I get the cankers they come with about 5 at a time or more and they clear then a new one comes in its place. It is so painful at times I can't even eat. Right now I can't drink coffee or anything that is acidic like wine, juice, and.....my favorite... tomatoes..  I don't know if what I am experiencing is food allergy related, jaw or menopause but I am frightened that I am going to get mouth cancer and whenever I go to the dentist I explain the situation but it always seems to get dismissed. I have all the signs for that unless I have Behchets disease which I do have a lot of symptoms. I hate that I have to research my symptoms online to get answers but seriously its like no one listens to me ever or I have so many issues they don't know where to start.

So for now I brush with special toothpaste and brush, mouthwash, candies that help create saliva, I swish my mouth with anbesol and dab on the Alum which was a solution for some online.

I should say that my doctor did notice that my last two blood tests came back with elevated IgM so she is sending me to an Immunologist which I am so thankful for. Maybe he can give me answers.

So for now I will just continue down this painful road and cross my fingers that someone can stop the pain.

2 Years Post Radical Hysterectomy

The last two years I can honestly say have been insane

I always thought that because I never really had huge side effects from Lupron like crazy hot flashes and joint pain things would have been different for me after my surgery. Even for the first month I felt like I had be saved from all that mess. I soon realized that was not the case and that I really feel that I literally went to hell and back. (This is not at all an exaggeration)

The best way for me to describe surgical menopause without any form of  HRT is like continuous torture of the mind, body and soul and losing hope that things will always and forever remain the way it is. I felt that things were at a stand still yet I felt at the same time things were going on continuously in fast forward speed. Every half hour I was completely taken over by hot flashes and I watched what I ate and drank in order to try to stop them but that really didn't make a difference. I felt like I wanted to scratch peoples faces off just for talking to me in a way that I took offence to. My body morphed into something similar to the Pillsbury dough boy with dark loose bags under each eye. There were days that I would look in the mirror and be in utter tears because I felt that I looked so much different.. ugly. fat and my self esteem took a huge nose dive. I could barely pull myself out of bed each morning, I stopped cooking, I stopped cleaning, and I stopped taking care of myself. I was just existing/surviving and not living. I will admit there were times I just wanted to end it all because I did not see this torture ending any time soon if ever....

I am still not sure how it happened but one day I just woke up and I didn't feel the same way physically and mentally. My mind was clear, the hot flashes were gone, and I felt happy for the first time in a long time. I would say the only thing that has not improved symptom wise is the overwhelming feeling of being tired and not having energy for anything....and bladder leakage ugh!

That being said I can look back now to where I came from at 13 yrs old and see where I am today with this disease and I can finally say that I am on the road to living... not existing but actually living. The quote  "You've seen my decent, now watch my rising" is truly perfect for me right now and where I am with my journey.

My mantra is "Still I rise" and I do just that.

Motherhood with Endometriosis

Infertility and Endometriosis is something that is talked about a lot these days and so it should be. It is something that is now getting more recognition in the last couple of years due to so much awareness from those that are infertile and those that are still struggling to conceive. Many of the women I have talked to and/or know that are going through this I truly empathize with.  

I really do wish my blog had more to do with infertility but I write from experience and for me after I had my daughter which I believe to this day is a miracle I never tried to have any more because the pain and suffering I went through with her alone was more than I could bear. 

During the first years of my daughters life (not diagnosed still at this time) I honestly thought I was losing my mind and the bowel pain I was going through was only getting worse. One night I actually saw demons that now I can describe as dementors (Harry Potter) I was literally losing it and I was yelling at my daughter and could not get any sleep as she was a very high maintenance baby and I was a single mother with no support in the early years. 

I had a dream that my daughter was hanging out the window and was calling for me and I just let her hand go... I watched her fall and I felt a huge sense of relief.. then I realized "what the hell did I just do?" and ran down to get her.. In my dream when I got there she just looked at me with this look of fear... of me... 

Around the time she was 3 years old I decided that I couldn't take much more after watching a program on Rogers TV about Post-partum depression and although she was 3 I really felt that I had that. Once I talked to the doctor in the ER he told me I just needed sleep and gave me sleeping pills. What if I wanted to kill myself? 

Around this time was when the 10cm complex cyst was found on my left ovary. I had been given marvelon (BCP) to deal with it and within a week it was night and day. I can't even explain the difference it made for me mentally. It was like I had a renewed life and I felt happier, I wasn't depressed and felt totally different with my daughter. 

So that being said most of my child's life (she is 12 now) has been filled with pain from Endometriosis, Chronic Fatigue and Fibromyalgia. It has been a constant battle to be a parent. There are times when I wish I never had a child and wish I could run away. I want to tell people with Endo not to have children but that wouldn't be right because my circumstances are much different than others. 

Being a parent with Endometriosis has been a life of saying I am sorry for being tired, I am sorry I need to lie down, sorry not today, sorry I can't play today, sorry you know how mommy's tummy hurts, sorry I wish I could do more.... you get the point right? I feel like I have been a horrible mother but I know that isn't the case. I just wish I could do a do over and not have Endometriosis and do all the things I always wanted to do with my daughter. 

As the days go by my daughter has become more self sufficient and it has made it easier on me because she can take care of herself, but it doesn't take away the guilt of not being able to give 110% to her. 

This disease has had it's challenges and looking back on it all and looking at my daughter I realize that I did a good job under all the circumstances. She talks about Endo to people and she empathizes when I am in pain and wants to help me. She believes me when I say I am in pain... I really think she was the first one to actually believe the pain of this disease before anyone else because she had to live with me every single day and see everything I did just to survive and I am still unsure if that is a good or bad thing at this time. I suppose time will only tell.  

I can say one thing for sure... I wouldn't be who I am without her or Endometriosis. 

My Period Is More Painful Than Cancer

I came across this story on Facebook about a girl named Nicole Malachi and didn't realize the connection with the Endo Warriors group. Not everyone is on Facebook so I felt it was important to share her story because there is a lot women who suffer and because we "Don't look sick" people push us away and tell us to suck it up and that it's only a period. She validates us as sufferers as she has experienced both Endo and cancer. It is a very good read and I hope it helps other people understand our pain is real and not exaggerated.

http://www.everydayhealth.com/columns/my-health-story/my-period-is-more-painful-than-cancer/

Coming off the continuous BCP after 7 yrs

Every now and then I get fed up and want to come off the pill. I have been on it so long and I don't want any medications in my system, I want to go natural. This has been a fight for me since I have been on them.

For me it is great that I don't get a period, I could care less to ever have one again and that is a plus being on the pill however the main reason I have stayed on it is because my body for some reason can't level its hormones on its own. Between the Progesterone and Estrogen one of them elevates and dominates the other. I used to think I was estrogen dominant since I had Endo but lately I have been thinking its more progesterone because when I was on Visanne which is progesterone only after a month I started to break out in red pimple like spots on my face, neck, back and chest. My breast would start to hurt and become overly sensitive and my mental state would deteriorate. When I come off the pill this happens to me like clockwork after the first month, then I get scared and go back on. I just remember mentally how I used to be before being diagnosed and it was hell. I had no control over my emotions however I want off. My body for some reason needs to feel pregnant.

What I find funny is that a majority of Endo sufferers are the opposite, very sick during pregnancy and deathly ill on the BCP. So why is my body different than the majority? People have migraines on them where for me it stopped them.

I used to suffer from chronic headaches from the age of 10 and migraines from the age of 15. The migraines were so debilitating I would end up in the ER because they would hit me and wake me up from my sleep and nothing I took would help and at first they used to last 24 hrs but the last one was 100+ hrs. Once being on the pill I never had a migraine again so that scares me too.

I want to feel normal again, but I also don't want to feel like this if I come off of it.

Have any of you had the same symptoms as me or were you the complete opposite?

Weight & Endometriosis

The battle of the bulge is what is what I like to call it. Chronic inflammation, Bloating, weight gain and pain.

We as Endosisters know all too well how much of a problem this is, how annoying it is and how painful it is.

I am Wheat, Spelt and Dairy intolerant so I do my best to remove those from my diet but really it is hard isn't it? I have tried every single diet known to man and there were very few that helped. Paleo takes away all grain and dairy and for me that did help with the pain in the bowels that I get but I still felt bloated.

The hard part with dealing with this problem is medications and hormones because you are constantly craving carbs and usually bad carbs and complete junk. Well for me that is the way it is for sure.

Since my first surgery in 2007 the same year I was put on Marvelon continuously after Lupron I have never been able to keep weight off and I am constantly bloated all the time. I don't get a period which is great but I hate feeling like I am pregnant all the time.

It has been 6 yrs now and I have been on at least one med that entire time so the chances of anything changing for me is minimal. I would say however I don't exercise because of the extreme chronic fatigue from the Endo and Fibromyalgia. I am tired and have no energy ever so I can see also why the weight seems to stay on.

Where does the weight go with you? Mine for sure is in the thighs, hips and Belly. Never to the place where I want it to go like my breasts LOL..

I know that Diet, lifestyle, and exercise are key to combating this problem but as any Endosister knows sometimes its just quite impossible and you get down on yourself. It is like a vicious circle.

What do you do to help with Chronic inflammation, weight gain and bloating?