Worse off having Endometriosis surgery in the first place?

Is this a thought that you have pondered some time since having surgery for Endometriosis? We always here that the "Gold Standard" is the best way to treat it but at what cost? What have you lost or what has changed since making that choice to have your first Endo surgery? This is something that I think about a lot. I suffered greatly long before the internet and I did have Stage IV (DIE) with Rectovaginal and bladder disease and I still question if I made the right choice after all this time.

For me I went to over 40+ doctors in a 14 yr time frame undergoing hundreds and hundreds of tests, appointments, exams etc. I suffered greatly in the hands the of the medical care system but how were they to know when they couldn't see anything. For me my first surgery was for answers. I couldn't handle another doctor saying to me that he didn't know and to go along and just try this anti-depressant this time....

Before surgery I was around 135-140 (Now 165) and I had chronic nausea for 2 yrs and couldn't go in the sun, reflux which made it hard to eat or drink anything along with migraines lasting over 100 hours which would end me up in the ER each time as nothing could help stop the pain and those started at 14. The rectal pain I would get wasn't just on my "Ladies days" it was at any given time and they would come out of no where. Days before my period I would evacuate my bowels which felt nice as I was always constipated and in pain because of it however that nice feeling didn't last long because as soon as the blood came so did the numbness, pain, vomiting and constipation again. It wasn't until the 7th day or so that I could have a bowel movement and then the pain would subside and same with the symptoms. The bladder issues I chalked up to child birth as it seemed to get worse when I was pregnant. I was diagnosed with Fibromyalgia at 17 yrs old and I always felt that I didn't have it and kept pursuing answers that would make sense.

Where would I be right now if I had done nothing and left it? I am pretty confused because I we are damned if we do and damned if we don't. We just end up with a different set of problems which some times end up worse than the original pain to begin with. If I am honest I can't even remember my endo pain anymore. I know it was brutal and I know that I suffered a lot but some days I wish I had that life back and some days I don't. It really is unfair.

What do you think? Do you think you should have just left it? Do you think it has made things worse? When will we be able to detect this disease before being opened up and also be able to manage the Endo without being cut open?

Where would the Pharmaceutical companies be without us #endo sufferers?

I posted an update on Facebook because something bothered me recently and it struck me that we keep all these companies in business and at what cost to us? 

From the time I was diagnosed in 2007 I spent $4500 on 9 months of Lupron injections, almost $2000 on BCP, and around $5000 on various meds such as Visanne, Antidepressants and pain meds. 

So imagine it......179 million women spend around $10,000 in 6 years just on meds alone to treat Endo not including, surgeries, tests etc. Imagine!!!! 

What if we said, enough is enough and we stopped? That would bring down so many Pharmaceutical companies it would be maddening. I wish this is something we could all do but I know there would be no way for this to happen since we suffer so greatly, however if we keep these companies in business and the government really controls those companies we will never get the surgeons we need.

This is so upsetting yet so clear on how we have been taken advantage of and swept under the rug just for the sake of money. We are worth nothing to them and we will continue to suffer because at the end of the day the only thing that matters is money in the pockets of the Pharmaceutical companies and Government.

That is just my thought for the day.

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?

Suicide & Endometriosis

I think this topic is a very important one to talk about and what peaked my curiosity was the fact there are no statistics really for this. Yes people commit suicide because of Chronic pain, Depression, Bipolar etc however what percentage of those people had Endometriosis and was triggered by the disease, the amount of care and understanding they got or the Hormone med etc.

I have posted about this girl named Kristi An Rose before but I think it should be brought up more because there needs to be awareness raised about Suicide and Endometriosis and that her life was not taken in vain. She deserves recognition for the fight she went through as well all know can be so debilitating and painful. Her mother wants her story to be told and why she died so that no other female will go through what she did and now even 4 yrs later we are still no further with awareness.

Click on the photo for her story

I have suffered from Depression since I was 10-11 yrs old and that is when the chronic headaches started. By the time I was 13 the Chronic pelvic pain started, Migraines by 15yrs that would leave me hospitalized, Fibro by 17yrs old and finally after 14yrs of the onset of Menstruation Stage IV Endometriosis. I have contemplated suicide more times than I can even count whether it be the treatment from doctors, the massive pain from Endometriosis, Relationship deterioration because of the disease and sexual dysfunction, The hormone medications you are put on to supposedly "Help the Endo from Growing" make you feel so isolated and alone and no one could possible understand what you are going through unless they live it. This disease has robbed my life in more ways than one. Last August I was prescribed Visanne to "treat the endo" and by month three I was so far mentally out of it and depressed that I was sitting in my car wanted to die that moment. I sat there for an hour and cried and in the end my daughter is who I thought about and why I didn't take my life that day. I could never ever make her feel the pain of me committing suicide because I would have totally changed the course of her life and I know her personality I am her world but for that hour the thoughts would not leave me. I wanted to die, I was done, done with the pain, done with the doctors and how after 23 yrs I am still treated with absolutely no respect for my well being or quality of life this disease has left me with. I chose to live not for me but for my daughter and that is the only reason I am alive right now because if I did not have her I would have offed myself a very long time ago. 

What I have learned in the last year from Dr. Redwine has made me open my eyes and see the facts. Nothing except complete excision (cut out to the root) will give you any kind of relief, no medication, not laser surgery etc. The fact remains that we are still suffering and no one seems to care. We don't have the surgeons that are skilled with this disease. Hormones work for certain people and not all and some are worse off being on them and they do NOT stop Endometriosis from growing, they do NOT suppress Endo, the purpose for these meds is to stop ovulation and periods therefore hopefully stop the pain but if you do not have excision surgery the chances of that even helping are minimal and the side effects are just not worth it so you end up in debilitating pain unnecessarily. 

I asked this question about the stats on Suicide and Endometriosis on the great EndoMetropolis page on Facebook that is run by Dr. Redwine and Libby Hopton. Libby had some great information for me about this. Please read her response to me below. 

"No formal studies. Of the limited research undertaken into the comorbidity between endometriosis and psychopathology, a strong association has been found between endo and depression (unipolar and bipolar) and anxiety. Probably no surprise. I think several mechanisms are likely at play though (not 'simply' the emotional impact of this disease and the pain and debilitation it often causes)... the disease itself could potentially contribute to or underlie cytokine-induced depression"
"Here's part of a paper I wrote on the subject. I can send the accompanying reference list/literature separately if useful."

Research on the quality of life of women suffering from endometriosis reports a significant negative impact in all domains of life, including mental health (Nnoaham et al., 2011). Of the limited research undertaken into the prevalence of psychopathology in women with endometriosis, depression has been identified as highly prevalent among these patients (Ferrero, Giordano, Abbamonte, Ragni, & Ramorgida, 2006; Lorencatto, Petta, Navarro, Bahamondes, & Matos, 2006; Sepulcri & Amaral, 2009). Prevalence rates of depressive disorders in cohorts of women with endometriosis with associated pelvic pain range between 46% and 86% (Ferrero et al., 2006; Lorencatto et al., 2006). Even in women with endometriosis who are asymptomatic, the prevalence of depressive disorders has been observed at 38% (Lorencatto et al., 2006), markedly higher than the estimated prevalence among women in general (Weissman & Olfson, 1995).

Several possible mechanisms may be involved in the heightened tendency towards depression in endometriosis: Hormone therapies employed in the palliative treatment of the disease have been linked to depressive symptoms (Warnock, Bundren, & Morris, 2000); infertility, regardless of cause, is associated with repeated losses, feelings of guilt and reduced self-esteem (Abbey, Andrews, & Halman, 1992; Mahlstedt, 1985; Sbaragli et al., 2008); and the impact of chronic pelvic pain on a patient’s personal and social relationships, work, and leisure time could contribute to the emergence of depression (Fourquet, Baez, Figueroa, Iriarte, & Flores, 2011; Nnoaham et al., 2011).

Furthermore, the inflammatory response of the immune system triggered by the presence of endometriotic lesions may play a role in the onset and maintenance of depressive symptoms in these patients (Nasyrova et al., 2011). Intraperitoneal studies in women with endometriosis have found that ectopic endometriotic lesions secrete chemotactic molecules, which in turn instigate the activity of immune cells in the peritoneal fluid, triggering cytokine release (Gazvani & Templeton, 2002; Harada, Iwabe, & Terakawa, 2001; Oral, Olive, & Arici, 1996). Women with endometriosis have been found to have an increased concentration of proinflammatory cytokines in the peritoneal fluid and blood serum, including interleukin-1 (IL-1), interleukin-2 (IL-2), interleukin-6 (IL-6), interleukin-8 (IL-8), and infereron- ɣ (Barcz et al., 2012; Nasyrova et al., 2011).

The role of cytokines in the aetiology of depression has received ongoing focus in the literature (for a review see Raison & Miller, 2011). Individuals with system-wide elevated concentrations of certain cytokines due to underlying chronic inflammatory disease commonly present with symptoms of ‘sickness behaviour’ (see table 1) (Dickens, McGowan, Clark-Carter, & Creed, 2002; Dunn, Swiergiel, & Beaurepaire, 2005; Foley et al., 1992; Minden & Schiffer, 1990). Likewise, the majority of patients undergoing IFN-α protocols involving sustained cytokine exposure for the treatment of Hepatitus C and certain cancers experience sickness symptoms shortly after commencing treatment (Gohier et al., 2003; Raison, Demetrashvili, Capuron, & Miller, 2005). There is considerable homology between some of the symptoms of sickness behaviour and the diagnostic criteria of idiopathic Major Depressive Disorder (Capuron et al., 2009). Several cytokines have been identified as possible markers in the emergence of sickness symptoms, including IL-1, IL-2, IL-8, LPS, IFN-α, IFN-β, and IFN-ɣ (Gohier et al., 2003; Kent, Bluthe, Kelley, & Dantzer, 1992; Levine et al., 1999; Maes, Bosmans, Meltzer, Scharpe, & Suy, 1993; Musselman et al., 2001; Nasyrova et al., 2011; Owen, Eccleston, Ferrier, & Young, 2001; Valentine, Meyers, King, Richelson, & Hauser, 1998).

Table 1
Sickness symptoms
Hypomotility (Lethargy)
Hyperthermia (Fever)
Hypophagia (Anorexia)
Hyperalgesia
Decreased interest in activities
Decreased sexual activity in females
Increased time spent sleeping
Physical symptoms (headache, muscle pain, nausea, and shivering)
Note. Adapted from Dunn et al., 2005

Visanne

Visanne, to take or not to take that is the question. 

In 2012 I was seeing a Endo Specialist at a pain clinic and she suggested I take Visanne to essentially help with the pain and stop my periods. During this time I was on Marvelon which works very well for me but since I was pushing for a surgery I felt that I needed to do what she asked just so that she felt that I was listening. I was told Visanne was new on the market in Canada and that it was similar to Lupron but in pill form and with less side effects. Visanne is a progesterone only pill and I should have known that my body can not just have progesterone.  I found Visanne did 1 thing for me and that was stop my periods. 

The side effects that I had were severe sharp pelvic knife like stabbing pains all over the pelvic region. My skin started to break out like crazy all over my face, neck, back, and chest. I started to get really depressed, I had insomnia and by the end of the third pack (3 months) I was completely off my rocker and suicidal. 

I am not saying that you should not try it because I am not that daft. I know that everyone responds to medication and treatments differently and I could never say don't take it, I can only express to you what I went through. 

Would I take it again? HELL NO!

I think I will stick with the Marvelon for now even though after 8 yrs I am starting to spot every month which I have never done before. I can't picture myself not on Marvelon. I have tried to come off it but what happened to me during my Visanne trial is what happens to me when I come off Marvelon. 

I always thought that I had an Estrogen dominance but for some reason I am thinking that it is actually Progesterone.

If you are looking for more information on Visanne here is the Bayer website. http://visanne.com/en/auth/prescribing-essentials/quick-visanne-facts/

What experiences have you had on Visanne?   

Pain medication for Endometriosis in Canada

I thought that I would write a post about this as I am off to see my doctor to sign off medical paperwork for OHIP for a possible surgery in Atlanta with Dr. Sinervo.

What I think is funny is that in Canada there is little to no excision surgeons to help get any relief from Endo. I had one of the best surgeons operate on me but he refused to operate again because he said the first surgery caused too much damage because of how deep it was and that I didn't have Endo I had "Neuropathic Pain Syndrome" Needless to say I asked Dr. Redwine about this and he said he has never given this diagnoses to any of his patients. So that being said I had no one to operate me that had any kind of skill whatsoever with this disease.

I was sent back to Wasser Pain Management Clinic in Toronto and saw the gynecologist there. To put this as nice as possible, she is a baby delivering doctor who is hopped up on what seems to be 20 red bulls when you talk to her. Nice lady and all but she just didn't have the skill and I went through a year of various medications but none to really help the pain. I know Visanne helped stop the periods but did it stop the pain? No.  I tried Amitriptyline for about 6 months with Visanne as well and that did little to comfort the pain just made me want to sleep.

If you want pain meds you need to end up in the ER but even then it is not like you can ask for anything because you end up looking like some drug addict. They make you feel bad for being in pain with a disease you never asked to have to begin with and because of their lack of education in this country and pretty much worldwide we are made to suffer endlessly for no reason. What a cruel joke.

I suffered for 14 yrs before being diagnosed so I know I can handle the pain for the most part and since my first surgery in 2007 I did have tremendous relief when the recto-vaginal cyst was removed however there are times I am in pain and no its not everyday like it used to be but its a couple of times a month since I am still on the Continuous BCP. So I feel that I am in a good place but there are days when the pain is so unreal and I have to suffer for no reason.

I plan to talk to my doctor today but as she has said "She knows nothing about Endo" so not sure how the heck she will even help me with pain relief. She is a nice doctor but is all about the natural ways of healing. Well I can tell you this, I am not healing and I am not even close to menopause so why is she making me suffer? I think for the most part in Canada there have been some major changes to pain relief for anyone so if I had a problem before you can most guarantee that I will have trouble now.

Is your doctor on the same page as you when it comes to Endo? Does she/he give you the relief you need?

Depression & Endometriosis

When I think back on my life I have tried so hard to think when this depression first came on and I really can't. I had many things going on in my life such as childhood abuse, school changes (This was so hard for me) High school and chronic pain.

I know that back when I was a teenager I was deeply depressed and stayed that way until around my 30's when I had gone to see several therapist and was tested on many Antidepressants. It wasn't until I went on Wellbutrin XL x 150mg that I really started to see things differently. I was on it for 5 yrs with limited side effects and it was easy to come off. I felt a little bit more normal and I went to various therapists and started to sort out my life and try to get over things that really had broken me.

When I turned 35 the Wellbutrin started to give me anxiety attacks so I had to come off it. It felt almost like a panic attack/ hypoglycemic mixed as one. I still have not figured out why it was doing that and it really sucks since I seem to get depression every 3 months like clock work. In the winter it lasts a lot longer.

I have had my fair share of Endometriosis Hormonal meds such as Lupron, Visanne and Marvelon. The only one that works for me is the Marvelon. Strange since it really doesn't seem to work for most Endo sufferers.

I found that the pain mixed with these hormonal meds really messed up my brain for a good 3 yrs. I have promised myself I will no longer be a guinea pig. If the pill stops working I will just have to suffer through it. I did it for 14 yrs can't see why I couldn't again.

Depression really sucks and for the most part I can feel it creeping up on me like this dark cloud that wants to wrap me in darkness and take me away. It is really scary. I find that if I post and think positive things its like a repellent, however if I post and think negative things that have to do with depression I bring myself to this place all by myself. I feel sad most of the time and it is really hard for me to find happiness in anything. I want to, but I don't think that I have ever been happy a day in my life. Its like that emotion doesn't exist for me.

Chronic pain has totally changed who I am and I think a lot of my depression now is the suffering for over 2 decades from not only Endo but Fibro, TMJ, Chronic Fatigue and various other problems. How can someone really be happy when they suffer like this? I feel like I am a good person but I seem to attract people that bring me down on a constant basis. I don't know how this happens and I want it to stop. Its like I am a magnet to anyone with problems and I don't mean Endo problems that want to pull me down to where they are and I want to help them but in the end I need to help myself and I always put other peoples feelings first and I care too much what people think.

So for me I think I bring myself to Depression because I think negative. I am a black and white thinker and I expect the worst to happen. If I don't worry then things work out and if I don't bad things happen. I guess for me its control. I can't seem to control anything else around me or my own body so this is what I do.

How do you stop such bad habit that has been formed?