WHAT ENDO IS IN MY WORDS
This disease effects 5.5 million north american women and more in other countries. About 30-40% of women with endo will have problems with infertility. The most common symptom is pelvic pain and painful periods or ovulation. No one knows what causes endo but we know tissues that are normally found in the uterus are found outside of the uterus in the pelvic cavity, ovaries, fallopian tubes, bladder, and/or bowel. Although, these tissues can be found in other areas of the body as well. These errent tissues bleed with menses causing blood flow in the pelvic cavity. This blood flow has no where to go and therefore causes inflammation, scar tissue and adhesions (scar tissue attaches organs together or organs to the pelvic cavity). Endo also causes endometriomas or cysts that bleed. They can be found inside or outside of the ovary. Other symptoms are: painful sex, painful urination with menses, fatigue (from chronic inflammation), painful bowel movements, and infertility.
IT SUCKS BECAUSE
It can destroy the ovaries by endometriomas left in the ovary will grow and squeeze healthy ovarian tissue until it is destroyed.
It can block fallopian tubes causing etopic pregnancies.
It can grown at the top of the vagina causing painful sex.
It can attach the bowel together causing a bowel obstruction.
It can adhere the ovary to the pelvic cavity or back causing back and pelvic pain.
It can attach to the urethra causing a blockage of urine.
It can cause so much inflammation that joints ache and fatigue sets in.
It can fuse everything together causing frozen pelvis syndrome.
It can cause early menopause by destroying ovaries or causing a hysterectomy to become necessary.
There is no cure though hysterectomies seem to stop the progression. Anyone with the disease typically has multiple surgeries to remove cysts and/or adhesions and/or ovaries or uterus. Anyone with disease has to go through some type of hormone treatment to stop estrogen which progresses the disease.
It sucks.
If you have endo. I recommend that you:
1) See an expert either a fertility doctor (if you ever plan to have kids down the road) or a doctor specializing in endo. DO NOT see a regular OB.
2) See a women’s health physical therapist for pelvic massage to break up adhesions and to make sure your pelvic floor muscles are not holding tension and adding to the pain
3) Go organic, and do not eat out of plastic containers, decrease soy intake just in case this is an autoimmune disorder and stop estrogen imitators.
4) See a whole health doctor to find out what supplements to take. I take multi, fish oil for inflammation, CoQ10 for fatique, and others.
6)Take pycogenol or OPC 3. It is the only supplement proven to help with the pain of endo.
5) See a therapist and if possible join a support group. This disease is not well understood, there are not a lot of experts and it can make you feel hopeless or like a victim. You will need your strength to fight this disease.
6) See your doctor regularly to check your ovaries. Do not let pain be your guide. Most of us with endo have high pain tolerances anyway and pain doesn’t mean that endo is severe it may just be the location of the endo.
7)Limit your internet searches to trusted sites only.
For more information. Check out these links:
As you read the posts you can see my struggle. I am trying to stay positive, trying to be strong, and trying to fight this disease.
If you have endo or can relate, please leave a comment and let me know how you are doing. We are all in this together.
I was diganosed when I was 18 years old. For the first year before I was diganosed I kept being told there was no way I had this.. Then I was in the ER five times and my ob’s office four times all within the same month and they finally decided maybe they should do surgery to find out for sure. But finally they did the surgery and found three cyst’s. Since then I have still been under the care of a regular ob and now am looking for a specialist. I am sick and tired of feeling like no one care’s and no one is listen’s.. I am now 24 years old. And I have not had my period since I had surgery, cause of conitnue’s birth control. Because of all my hormones treatment’s I have all the side affect’s of menopause. Which the doctor’s said would go away. Yeah right. They keep telling me there’s no reason why I’m in pain here and there. But there not the ones stuck in bed for hours at a time and can’t move. Or it hurts.. and or just lay there and yeah it still hurts.
That is a long time to be on birth control. I was on it for 2 or 3 years without a period until the side effects became too much. I had annoying side effects but also serious ones like headaches and depression. The only good think was the hair on my arms and legs thinned.
I hear struggles like yours all the time. I think it is important to get the support that you need. You definately need to find a specialist. Regular ob’s are not always good at dealing with this. Your young and if you ever think you might want to have children, I suggest seeing a fertility doctor who also specializes in endometriosis. They are usually very understanding and kind since they are used to dealing with women in a fragile state who are dealing with infertility.
The biggest problem I had with this disease was that I allowed myself to become a victim. I lived in pain because I didn’t know what else to do. I was at the whim of doctors that were ignorant about this disease and I felt very depressed and hopeless. Get educated and get an educated doctor and get a therapist if you need one. Especially a physical therapist that treats the pelvic floor. This helps with the pain amazingly!
Good Luck. Stay Strong. Try the links above.
in Germany and then in the United States
Hi
I was diagnosed with endometriosis when I was 17 (I am 21 now) after I finally convinced the doctors to do a laparoscopy after years of pain so bad I could not leave my house and having to set my alarm to get up every hour overnight when I had my two week long periods to stop myself from completely ruining all of my sheets and pyjamas.
They confirmed that I had lots of endometrial deposits along with dozens of cysts including one which had been twisting one of my ovaries and would have cut off its blood supply if it had not been removed.
I had a nightmare recovery as my incompetent Gyno had not sewed up my wound properly and I knew something was wrong with it. I went to three different doctors, in the three days after my surgery and each of them said there was nothing wrong. After that I was informed by friends and family that it was time to be quiet about the issue and stop being silly. It wasnt until a few days later when the infection really set in and my wound began to smell bad that I got anyone to listen to me. As a result of this infection my scar is much worse than it should have been.
As a result I have not been back to see my gyno since the follow up appointment after the surgery. She suggested no follow up. She suggested nothing that I should be taking or doing. She gave me a few pamphlets but that is all. Her office hasnt called me about making any other appointments so I have been unsure of what I should do.
The only positive thing is I have found a way to almost cancel out the symptoms (the pain and bleeding anyway) by having a Implanon put in. It means that I only bleed a little every few months. The fact that the symptoms are being dampened doesnt give me any comfort regarding the actual state of the disease and although I am not looking to have children at this time (need to find them a father first
) I worry every day about my fertility.
it’s wonderful to find out what others are doing on WORDPRESS… like what you are doing.
Emmanuel Kato.
I ‘ve tried to load my picture but its not just working. Can you help out?
Hi Emmanuel,
Check out this link to see if you can get help loading your picture/avatar.
I like your site too.
http://faq.wordpress.com/2007/02/27/what-is-an-avatar/
Hi Jo,
It sounds like you have had quite a few years of suffering. Endo is so hard to deal with alone that is why one of my typical recommendations to anyone dealing with a chronic, painful disease is to get a good therapist to help you cope.
I also think you should be seeing a doctor regularly for this. You should get a new gyno that specializes in endo. Your local fertility clinic may see you even though you are not yet trying to get pregnant or they can recommend another doctor. Whatever you do, do not think it is hopeless. This disease can make you feel like a victim, do not let it. Make sure you are in charge of your care and ask for support when you need it.
Good Luck,
Lna
I had my tubes tied after my 2nd child. One year later I went to the hospital in pain. I was about 2 1/2 mths pregnant. Etopic pregnancy. They did emergency surgery because my left tube had finally ruptured causing me to bleed out into my abdomin. Because of me getting pregnant inside a tied tube they removed the right one as well. Within a couple of months after the surgery I began having the pains that reminded me of contractions because of the way they would come in waves.
I aslo have a dull ache that is constant. The ache is in my hip bone. It feels like the marrow in my bones is what’s hurting and it travels down my leg. It sometimes reaches my foot it hurts so low. The pain is mostly on the right side. Every once in awhile I’ll have the same pain on the left. I find it hard to sit, use the bathroom (#1and #2). In the beginning it was every day and all day. I could only go two hours pain free on tylenol. If I went 2 hours and 15 minutes I was in the horrible pain for about 4 hours and that’s with popping 3 or 4 tylenol every half an hour until the pain goes away. After about 8 mths I went to the doctor. He did an internal ultra sound and I had 6 cysts on the right ovary and 1 on the other. He said he wanted to wait another month to see if the cysts disappaitted. Then we would talk about removing my ovary. I went to another doctor about a year later. He said that it could be a number of things causing my pain. That it was not necessarily the cysts causing my pain. He gave me a strong dose of antibiotics to see if maybe I had an infection I couldn’t get rid of. All I got was the worst yeast infection I’ve ever had. It took 2 months to get rid of. Pain still here!! Ever since I did that now 2years later I have cronick yeast infections. I get a yeast infection with every period. And I get bacterial infections. My periods are so painful, I cry or get crazy mad over the littlest things, and the blood clots are huge and numerous. Sometimes my period last 8 days or 2 in a month.
The fatigue is unbearable. My daughter is now 6years old.
This is a long time to go through pain and different doctors opinions. My mom had peratenium cancer. They had to remove one ovary that was completely covered in cancer, the other was twisted and deformed, removed part of her rectum, cut out part of her intestines, and scraped off the lining that hold your guts in called the peratenium. My mom past 7mths after her surgery. Should I be worried about this turning to cancer what ever is causing my pain? What is causing my pain and is this normal? What should I do to fix the problem?
Waiting for an answer,
Jennifer
Dear Jennifer,
I am so sorry for you going through all this. Please, please do not suffer anymore. I went through 7 (yes, 7!) ob/gyns before I felt comfortable and taken care off. First and foremost, you need to see a doctor that specializes in gynocology and not ob. That would be a doctor that only does gyn.
You will want to explain your concerns regarding your mom’s cancer. I can’t tell you not to worry. You need to have a doctor rule out cancer. You have to take control over your well-being and health. You have a 6 year old daughter that needs you. You must find a doctor that can help you get to the solution to what you are going through. You need a diagnosis. Please keep me posted on how you are doing.
Take good care,
lna
I just went through a long surgery – supposedly to reconnect an endometriosis-caused emergency colostomy. But, when they opened me up, I had so much scar tissue they didn’t proceed. My uterus was scarred to my remaining rectum and then didn’t think they could correct it. They did remove major adhesions. I regret not going back to my original fertility surgeon and CR surgeons!
I think you mean you went through a surgery for anastomosis to reconnect your intestines. But what happened to cause the surgery in the first place? Did endometriosis scar your bowel so it didn’t connect anymore? You poor thing! You have been through much. Did you get rid of the colostomy yet?
lna
I have endometriosis, I was diagnosised in 96, and had my first lap, was on yazmine for about 7 years that help with my pain and bad periods then all of suddenly the past two years I was experiencing worsening periods and pain that occured two weeks prior to menses. I went to three different obgyn one NP said I had vaginitis gave me levaquine and put me on effexor even after I told her that I had endometriosis, I didnt have vaginitis, and the effexor put gave me sever side effects after first dose hr 170. Than I found a new OBGYN in my area, told her my problems, she said to have a lap and I was due for on. Well she examined me and told me she could feel the cyst on my rt ovary and scheduled me for surgery the following week. Well I had gotton my period went to work and that large cyst ruptured. I left work in sever pain went to her office and she said I shouldnt have come there but go straight to the er, anyways she put me into the hospital performed a lap the next day and she told my family it was the worst case she has ever seen and I had soo much blood in my abd cavity and the endo was everywhere all over my organs but she only consentrated from the belly botton down. She removed six cyst on my rt and 3 on my lf ovary, then cut muscle and nerves for I had adhessions all over my bowel bladder and uriters. I did well after surgery went home and did all the walking I could do because I knew the gas build up could cause lots of pain. Well it took me 16 hours to pee. The second night I passed out while urinating from the pain, I had sever thrush and couldnt have a bowel movement with out screaming my head off. For a whole week straight I call the doctor r/t pain and no call back finally my mother called and demanded I get attention, The doctor called back and said there is nothing she could do and for me to go to the ER. I then decided not to and go to my primary doc becuz I am a nurse and know how the er works and i didnt want iv drugs but to find out what is wrong. Well my primary put me on cipro for bladder infection and it helped, I then had my 2 week follow up with her and she told me I didnt have a bladder infection, I have endometriosis and will have pain for the rest of my life, I told her I didn’t have pain like this only for like a day or two during menses and she said well get used to it and dont call her for pain becuz she did the surgery cut my sacral nerve and I should be in the pain I was describing. Well she sent me a certified letter one week later telling me that she can no longer be my md. I cried I was like what did I do, I didnt ask for anything and looked to for support. I then went to a specialist thats an hour away, they put me on Argytin continuallly which stops menses all together but not as strong as being on lupron,(which I didnt want anyways) I have been calling them and telling them weeklly about my pain and they said I would be in pain for 2-3 mths experience hot flashes due to surgery and meds but to do acuipuncture for pain take cataflan and learn to deal with it, I have endometriosis and many people with endometrisosis are drug seeking. I told her I am not I am looking for answers becuz I didnt hurt like this prior to surgery and my life has crumbled where its hard to work and I cant do any of the activities I onced enjoyed. She told me to see my primary or go to the er for pain meds then. Like omg I cant find anyone in the tampa bay area to help me. This disorder is serious and I have delt with this for 13 yrs and now when I need help I get the door slammed in my face. The only one who seems to care is my primary in which he told me he is certified in acuipuncture and its only a placebo and dosnt do it. He believes me and told me to go 200 miles or more if I have to find someone that can give me the answers or at least help me find the answers. Sorry for the long detail I am at my wits end. Doc should be attempting to be healers or at least caring but this disorder is not recognized enough talked about enough and definitly not taken seriously enough. If someone out there has gone through this please let me know how to cope or even manage this
I don’t even know what to say…it sounds like you haven’t found the right doc yet. I would search the web for a doc that specializes in endo in your area. I would start taking omega 3 and OPC 3. I would also find a physical therapist that deals with pelvic pain. You have to learn to cope with the pain and a psychologist who specializes in pain management may help. There are TENS units and relaxation techniques that help. Please don’t get discouraged…you will find the help you need. Good Luck.