It's been a while

 I just joined Bluesky as I was banned from twitter due to the toxic nature of that platform. It used to be a place where people with Endo joined together and could talk about our own journeys and help each other find surgeons and just give support and advice. It was a movement like no other and that is how the first Worldwide Endometriosis march happened. Leave the toxic behind and come back to the peace we once knew. 

https://bsky.app/profile/endendoforever.bsky.social

Parametrial Endometriosis Surgery & Sacral Nerve Entrapment

Photo Credit  IFEM Endo

I can't believe it has been so long since I last posted. I always feel like they are going to take down my blog due to inactivity but they haven't. 

I am a little late posting about my surgery October 2019 for Parametrial Endometriosis & Sacral Nerve Entrapment. I have to say this was a very painful surgery with so many complications that are still affecting me today. I am not sure what I was expecting exactly but not at all what ended up happening. 

Before my surgery during pre-op I had told the anesthesiologist that I have a high pain tolerance and I need stronger meds than what are usually given. In fact I have said this before every surgery and it never happens and it happened once again. Upon awakening I was in severe pain and I am asking about my friend who came with me and I was told she left. I was really confused as to why she would do as well as taking my cell phone with her. I started to panic because I was alone and asked for the phone and had to ask for my emergency contact telephone number because as all of you know we don't really remember phone numbers anymore. I end up getting ahold of her and she said that they were closing down the waiting room and it still showed me in surgery on the screen. She was nervous about going to the underground parking so she left. I was pretty annoyed but whatever. She told me she did talk to the resident because she was asking what was going on and why it was taking longer than the time allotted. My surgery was already delayed by 2 hours due to complications with the patient prior. The surgery was supposed to be 3 hrs max but ended up being 6. She told me that they found a huge endometrioma on my bladder and that they nicked my ureter and had to wait an hour for a urologist to come in to tell them to stitch it or put a stent in. This is really weird due to the fact that the surgeon is a Urogynaecologist . There were so many question and I didn't get answers until the next day. I told the nurse that I was in severe pain. I have a drain bag and a catheter filled with blood and considering the surgery was so extensive they just told me they don't give opiods. These doctors don't seem to understand that opiods are important when it comes to healing from surgery and that is something they should know. 

I started writing this in 2019 and I will just pick up where I left off in another post. 

Parametrial endometriosis

Laparoscopic anatomy of the autonomic nerves of the pelvis and the concept of nerve sparing-Dr. Lemos

I finally got in to see a new Endometriosis specialist who deals with the nerves and bladder. Technically he is a urogynecologist but he knows his stuff. 

I had the initial consultation with his intern which is normal and I am happy to help teach and then he came in and told me that he is almost positive that I have Parametrial Endometriosis (LPE is a condition that reflects a more severe manifestation of endometriosis, requiring more aggressive surgery.)and is sending me for an MRI scan which I have never had for Endo considering how deep I have it, a urodynamic and cystoscopy and I am to take a rectal suppository that has a muscle relaxant (Baclofen-muscle relaxant and anti-spastic agent) It possibly works by decreasing excitatory neurotransmitter release) in it and gabapentin for the nerves. Right away I am floored because I have always asked how deep is too deep to go when dealing with endo but no one has ever been able to answer that until that day. I will need to have another surgery but I know I am in good hands. He even asked if I wanted to hold his hand while the intern examined me and told me about the surgery he is going to do (Video above) and for me to watch it. I am not sure what the PSN has to do with the issues I have no but I overheard the doctor mention something about it to his intern. It makes me wonder now what it was that he was talking about. Did the nerve grow back? Did cutting the nerve cause more damage?  

For anyone new reading this I had my first surgery in 2007 and it lasted five hours. During my surgery he also did a PSN where they sever the nerve from your uterus to the spine to stop the pain signal from coming. I was diagnosed with stage IV (DIE). He was confident he got it all and since he was a so called "Endometriosis specialist" in my city/country I believed him. I started developing pain again in my bladder and bowels three years later and he refused to help me because he said it was too complex but sent me to a baby doctor. That is what I like to call a regular gyno with very limited experience with endometriosis. In 2013 after a year long stint of medications that did not work she did surgery in which she said she couldn't get it all and called it superficial endo. Fast forward to 2014 after I wrote my original surgeon a letter he had me in his office and we discussed a radical hysterectomy. For the most part it was me pushing, he really did not want to do it but I could not go through another two decades of this run around. I knew I was going to have bowel and bladder issues for some reason after and even going in he had me believing there was nothing there and it was all in my head. Well it wasn't, it was just as deep as my first surgery including recurrence of recto vaginal endo which  he removed a large portion of my vagina to remove along with my pelvic lining in order to remove my ureters and ovary that was in bedded into my pelvic wall with dense adhesion's. Going into surgical menopause was a complete nightmare and I was refused any sort of HRT by my family doctor so I rode it out and it took four years to make me feel like myself again and even now I am not 100% right. 

The last four years I started to lose cognitive function, my reaction time is slower, and I started to get sharp pains in my urethra and vaginal area anytime my bowels moved around. I also am severely constipated which can happen after a PSN and from any of the medications that I have been put on. I have left SI joint dysfunction and hip pain along with nerve and muscle pain from pelvic floor spasms. I don't have the normal endo pain anymore this is something so different which sucks just as bad. 

I have yet to get the compound suppositories but I am supposed to take those 2-3 times a day and not stop even if I feel better.  So that is where I am at right now with this disease. I didn't think that I would be back in this situation again but it is happening and I am just happy that I have an amazing surgeon that listened to me and didn't make me feel like I was making this pain up. I am lucky to have found this doctor. 

Has anyone else had this surgery before? I could use a little more information on the outcome of your surgery. 

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.