How long does surgical menopause last?

I haven't written in a long time and it is mostly because I have no idea what is happening to me. I just don't feel normal and I am not sure why. Yes I still have hot flashes but the Cymbalta definitely helps to lessen them as well as helps my bladder spasms. 

Here is the thing.. My nose, ears and mouth are completely dried up. My eyes perfectly fine and many tests that I have had came back negative for ANA/RA so no Sjogren’s syndrome, so I am completely confused and living in utter hell at the moment I would say. My inner ears are so itchy and sometimes its white and flaky which has never happened before. The other day I did notice almost a red ting to the ear wax. My mouth on the other hand, wow it just never ending thirst. I drink at least 4 liters of water a day and I just can't quench my thirst. I started to develop "Burning mouth syndrome" which I thought was from upping the Cymbalta but now I don't know what it is from. My nose has been dry the longest. It started when I was on the continuous BCP 2008 and it has never gone away. I have tried so many things and at one point I was told it was a tiny cyst and that was removed and now its the other nostril but it just seems dry and my nose NEVER runs even if I have cold.  

I have yet to take HRT because everything else is fine, I think. I am 38 and my hysterectomy was May 2014 so that is coming up to 2 yrs. I am utterly confused about this subject. I know that I am young and that I already have mild osteo in my jaw but am I setting myself up for more problems if I take it? My worry is heart disease mostly because it runs in my family and I have been having a lot of heart issues with anxiety which I truly think was brought on in 2007 when I was put on Lupron. I didn't think of it until now and it scares me to go on anything else which could increase my risk.

Seriously though, when does this end... When?  

If anyone has any suggestions or is going through the same thing I would be more than happy to hear from you :)

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. 

The never ending feeling of fatigue #Endo #Fibro #spoonie

The fatigue cycle for me has gone on since I was 16 yrs old about a year before I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia and Chronic Pain at 17 and Endo at 27. When people say they are tired to me I usually just ignore them because the extent of tired I feel is no where measured to someone who does not live in Chronic pain or suffer from CFS. The best way it has been described is feeling like you have been run over by a Mac truck and to be honest it does as well as over and over and over again.

When I wake up I am groggy usually from whatever med has been prescribed for me to use. When I am not on meds I don't have the groggy feeling just more of the extreme exhaustion. I had a sleep test done in the 90's and was told I have Restless Leg Syndrome as well as I don't enter a REM sleep stage. It has gotten worse over the years especially when I am on certain medications when it gets really bad I want to cut off my legs. The one thing I have tried is wearing baseball socks, it seems to calm down the nerves to some degree to at least yet me sleep. A couple of meds that make the RLS worse that I have tried is Gravol, Lorazepam, Cymbalta, and any kind of pain med like Percocet and some times my Jaw muscle relaxant Flexeril.

I often think that I do many messed up things in my sleep. I often think of recording myself because I have done things in my sleep like, sleep walking, talking as well as even taking a cast off in my sleep and putting in the bathroom.

Throughout the day I am exhausted and all I think about is going home to bed, but like any mother that just can't be done. Dinner has to be made, homework done, and spending time with the family this makes it really difficult for someone with Chronic Fatigue because you start to get very irritable, short term memory loss, and emotional outbursts. When its finally time for me to go to bed around 9-10 I am wide awake... UGH. This cycle drives me crazy, and I usually can't fall asleep until like 1-2 am so at the end of the day I am barely getting 5 hrs sleep a night.

I went through 5 yrs of really bad insomnia when I was first diagnosed with Fibro. I could not sleep for the life of me. I would finally doze off at 5 am and have to be up at 6:30 to be at work for 7 am. I would not take those days back for anything. I was lacking so much sleep I became depressed and suicidal. During those years I was under a lot of stress with the job I my mind would not shut of at all. I would replay anything and everything that happened during the day and there was no way to stop it and all doctors wanted to do was push me Antidepressants.

I am lucky now that I don't have those thoughts but I have a very high stress job which I am barely able to cope with which makes all my conditions worse. Pain from Endo such as bowel, bladder and pelvic pain keep me up most nights as well as the nerves all over my body that seem to be inflamed on a daily basis. No position I sleep in is comfortable. I have tried a new bed, pillows etc and nothing. My circulation cuts off on every angle and that is where the struggle comes in when I am trying to just get to sleep. Not to mention when I finally get to that point my IC kicks in and I have to constantly get out of bed to pee and start over... Someone shoot me.

It is a week before Christmas and I am so done mentally, physically and emotionally. I feel like I am on the verge of a nervous breakdown and nothing I do is helping at all. I come home now to read or watch TV.

I was told that drinking wine is better than taking meds and for the most part I have done this but lately it is really messing up my sleep. I wake up every hour on the hour if I drink wine and that is just not working for me.

I am not sure how much longer I am going to be able to cope as I debate every single morning when I am forced to wake up to even bother going to work, but reality is that I have to, there is no other way around it. I don't work for a company that I can take short term disability to see if this helps because I will be shunned and treated like crap so its better for me to suffer and hide what I go through because I need my job.

All I want to do is sleep I am in a state of tired that I don't think I will ever ever get out of. I have absolutely no energy to do anything. The only people that really understand are the ones that experience this sort of Chronic Fatigue.

Lost in my own world. #Depression #Chronicpain

It always seems that around this time of year I fall into a depression so deep that it is so hard to get out. It could be SAD but I know I struggle through out the entire year. I think in the summer I am more occupied and my mind does not sit idle but I do not like winter/cold at all so I am inside most of the time so I guess that is why it seems to be worse around the last 3 months of the year.

I have really learned to cope with Depression when I feel it coming on throughout the year, I trick my mind which took a very long time to learn and I wish I had learned how to do it sooner. As soon as I feel depressed I started tweeting funny pictures to help other people in their struggles then in turn it helps me not focus on what is happening in my own mind.

The last month I have gotten so deep that I am afraid but I do not want to take medications, they just don't work for me and I have tried many.

My eating disorder has gotten so out of hand but it is the only thing that makes me feel better. It stops me from thinking and it stops the pain from Endometriosis. Nothing makes me happy and I have always felt that way. If I become happy about something, something bad happens. I know that sounds just so ridiculous but that is how it has been in my life. I wish that I could find some joy but it is like I was not born with it. I have to really force myself to be happy and it helps but deep inside I just feel lost in my own world. I don't get close to people and I like to be by myself. I do like my own company a lot, maybe too much?

I am not much to go out and socialize and when plans get cancelled deep inside I am happy.

I have lived with Chronic pain as long as I can remember. I have known nothing but pain, physically, sexually, mentally and emotionally. Life sucks yet I am afraid to die. I just want to live with out pain and mental illness. I really don't know what came first but I always remember not really being happy or content with anything. How fair is that for someone to live like this? Depression you can't just snap out no matter how hard you try. I am convinced that I am wired completely different than other people. I am not normal but I guess, what is normal? No one is I suppose.

It has been hard even being a parent to my daughter. I know there are Endosisters out that that can't conceive and it kills me that I did and that I can't cope. I have no idea how I even made it this far being a mother because mentally and physically I can barely manage to get out of bed and my mind is all over the place all the time. If my daughter ends up with Endometriosis or any form of Chronic illness I don't know what I would do. I literally don't think I would be able to manage the both of us.

I am hoping that in 2014 I will be free from all of this, but I have to accept reality that this is who I am and I need to accept this is person I will be for the rest of my life. I can't seem to want to accept that, as there is always a fire and hope that one day the pain will end. I have clung to that hope for 23 yrs and I can't see me doing this another 23.

Why Should I help other Endo Sufferers?

I often think "How on earth can I possibly keep up with all the awareness and helping others on Twitter, Facebook and Medhelp" There is no real response I just do.

People in my own life that are in my family or inner circle have no clue what I have been through in the last 23 years. If I asked them how many doctors I have seen in the last 23 years they would probably say 10. Most people who walk among you daily don't even have a clue to what you have been through, how many doctors you have see or how many tests have been done.

I started seeing doctors at the age of 14 on my own. I found that my regular GP wasn't all there however she was the first to say the word "Endometriosis" after a TVUS when I was 13 but only gave me Anaprox and Naproxen to treat it.

Unfortunately by the time I was 17 I had full blown Fibromyalgia which to this day I feel was brought on by undiagnosed Endometriosis and had seen 40+ doctors and specialists by the time I was 32 years old.

Every doctor made me feel like I was making this pain up. My second GP I was with for a couple of years and he did try by sending me to all of these specialists and put me on various drugs but by the time I was 17 he said "I can no longer see you because you cry too much"

So here I am at 17 years old. I have Fibromylagia and no one knows what the hell it is and I start to get even more depressed. The pain is unreal and its all over, no wonder Endo took so long to diagnose because I could not specifically tell them where the pain was because it was EVERYWHERE.

I have had 3 colonoscopies, 2 MRI's on my head, 5 CT scans on my head, nose, and abdomen, 2 upper and lower GI Series done, ANA testing, Celiac testing, a Cystoscopy, 2 colposcopies, 1 leep, a sleep test, about 20 or more PAPS, I can't even count the amount of X-rays, Ultrasounds, TVUS and blood tests from head to toe. I have had nerve testing, multiple ECG testing, instruments stuck up my nose, in my ears, etc. I could really go on but I think you get the point. All of this and nothing really substantial came up. I was told I had Chronic Sinusitis and I was missing a frontal sinus, I had a deviated septum, tinnitus (Tubes put in my ears prior in my teenage years which did nothing), Possible MS, Possible Lymes, Possible Elhers Danlos Syndrome, Restless leg, Major Depression, Generalized Anxiety, Chronic Yeast infections, Thoracic Outlet syndrome, Sciatic Nerve compression, SI joint was seized, Osgood Schlatters Disease, TMJ (surgery), Intolerance to Wheat, Spelt, and Dairy.

That is just part of the testing that I can remember but next is the medications they put me on. First one I can remember is Naproxen, Anaprox, Paxil, Zoloft, Celexa, Cymbalta, Wellbutrin XL, Marvelon, Lupron, Visanne, Amitriptyline, Gabapentin, Oxycodone, Percocet, Flexeril and enough Advil and Aleve to really kill a liver.

After doing this all alone and I mean alone. I know my mother cares now but I don't really think at the time she believed me. So I battled Chronic Headaches, to migraines, to Massive pelvic cramping and rectal pain at the time I was 10-15 yrs old, I would say around that time is when 100% I did the rest on my own.

So when I look back on what I went through the amount of times I contemplated suicide, the side effects of all the medications and the Endo pain that wasn't even diagnosed with until I was 27 years old and what I had to go through I had no choice but to speak for those who couldn't. There was and is no way I was going to keep silent. I will never let my daughter who possibly could end up having Endo go through this or any other person. I was alone, I was depressed and even my family would call me a Hypochondriac. You as Endosisters know what I am talking about and I am sure you have all been through so many of the same situations and/or different.

How can I keep quiet? Why do they not want to help us?

Anyways because of all that I went through I could not imagine for a second someone else going through the torture that I went through. So this is why I help others and not even just Endosisters but my Fibro friends, and anyone with Chronic illnesses because I know what it is like and I would never want someone to go through this alone like I did.

Parenting & Endometriosis (PPD/Co-Morbid Diseases)

I read an article that inspired me to write about this topic. Not only was I not diagnosed with Endometriosis at the time but I was a single mother living with Fibromyalgia and Chronic Fatigue syndrome.

I was diagnosed with Fibro when I was 17 yrs old, so young that people would not even listen to me when I talked about. I suffered debilitating fatigue and could barely function and the body pain I experienced was so unreal that I had a hard time even explaining it to doctors because I hurt all over. I really think that because of my uncertainty is why it took 14 yrs to diagnose Endometriosis.

I became pregnant during an abusive relationship (sexually, physically and Mentally) while trying to find a pill that I wouldn't continuously bleed on. I was 23. I couldn't believe I was pregnant, I was so upset because of the circumstances I was in, how could I raise a child in this environment I was living?

The pregnancy itself for me was great as I never felt better, I was never sick, nauseated or anything however the stress from the abusive relationship was coming to the point that I wanted to kill myself. I remember sitting there after the floors had just been varnished and no one was supposed to be in there but I was there wanting to die. In my mind there was no way I could continue this relationship without my daughter being abused.

When Grace turned 5 weeks her father was mad at me for God knows what as it was all the time, that he took Grace and and slammed her on the couch. I lost my bloody mind. I called the police and they escorted me out. I left his 5 yr old son behind as there was nothing I could do for him and there would have been no way I could have helped him if I could barely help myself. He eventually stopped communication after I told him I would call the police if he ever called me again. Court ordered supervised visitation with my parents in which he never to this day followed through nor did he pay for child support.

I was completely alone, exhausted, mentally breaking down. I didn't know how much longer I would be able to cope with the Chronic illness I was suffering from and raising a child on my own with absolutely no help whatsoever.

I managed to get into subsidized housing but as soon as I went back to work the rent went up plus I had to pay for child care. To this day I have no idea how I managed at all.

From birth to age 4 I can't even remember being there mentally. It was during that time I saw this ad on TV about postpartum depression and realized that I had undiagnosed PPD that turned into Manic Depression because it was never treated. I went to the hospital told the doctor what I was going through and he gave me sleeping pills and told me to go home. He didn't even offer any services that could help me just "Go home and sleep it off".. Well lets see, I had the most spirited baby who could not be picked up, put down, held, fed etc. All she did was cry at at times slam her head down in the floor because she was frustrated. She would cry as a baby for 5 hrs straight.

At its worst moment I finally went to see my doctor at the time as I was losing my marbles literally. I was seeing demons in my room at night and I was just not sleeping enough. The doctors secretary booked me in and when I got there I realized she must have squeezed me in because of how urgently I needed to talk to him. Well he comes over to me and says "What exactly is your problem today that you have to bud in front of all these kind people?" Are you fucking kidding me? I looked at him and told him to "fuck off" and walked out and bawled all the way home. I had no one. I wanted to throw my child and then kill myself I was that messed up mentally. I even called my mother and she said to me "I had 3 kids I never had PPD either do you?" Good Lord. Why did people not want to help me?

So with all of this going on such, as going back to work, Court hearings, affording child care and rent with no other income but my own, no one to watch her ever, Fibro flares and exhaustion were really sending me over the edge not to mention I was having more migraines than ever at that time. Random too.

When my daughter was 4 I decided to do this colon cleanse as I was having such bad rectal pain and was always constipated. Well I have to say I need to thanks Colonix as that was when the pain got so intense I went to my new doctor and had an ultrasound done. There they found a 10 cm Complex cyst on my left ovary. During that time I was put on Marvelon continuously to try to "shrink" the cyst and it was night and day with my hormones. I couldn't believe how I great I felt on the pill. I couldn't have cared less of what was going on inside of me because for the first time mentally I was stable.

In 2007 at the age of 27 I was finally operated on and diagnosed with Stage IV Endometriosis.

Looking back now I feel that a lot of the mental anguish I went through was due to Endo and my hormones being whacked out. Also I really strongly believe that the Fibro I was diagnosed with was induced by the Endo and the Chronic Fatigue was actually the Endo as well.

I am at a good place in my life right now by I am still Chronically ill. I love my daughter so much and I feel that some days I have let her down so much as a mother as I can't do the things she wants me to do at times. She is a very high maintenance child and always has been. She saved my life literally. I would not be where I am today if I hadn't gone down the path I did and rose above all circumstances if she wasn't in my life.

So although there has been some really crappy days the good ones outweigh the bad. She understands the spoon theory and she gets when I am tired. She is 10 yrs old now and I am not sure what she will think of me when she is older but she definitely has empathy since she has seen me go through such low times.

Living in Chronic pain with co-morbid diseases and having a child is an incredibly hard time and I did it alone so I wouldn't know if you had someone helping you if it would make a difference. All I know is that I made it and I am glad I didn't take my life or hers and that I can look back and see how very far I have come.

Would I do this again? Hell no.