I am suffering immensely with this horrible disease, I am 34 and have been living with endometriosis for about 4 yrs. I am currently on my second bout of lupron and can't wait till its finished, I wont ever take this shot again. I have been to see countless doctors that tell me my endometriosis is too advanced to operate and I wont have children.
My symptoms are constant extreme pelvic pain, lower back pain, chronic fatigue, constipation and lots of headaches. I'm at a point where I don’t know what to do and I'm getting very nervous because of the amount of pain I'm in all day long .... painkillers don’t help any more. I've lost all my energy and my lustre for life, I’m confined to my bed with the heating pad on my stomach all night. I used to enjoy life and be very adventurous, and now its a battle just to get to work. Does anyone have this as severe as I do ? Can anyone help?
Bowel problems and told it was IBS
A long story made short..... When I was about 13 I started noticing problems with my period. I just figured it was normal. By the time I was about 21 it got so bad every month that I would be at home for a week living on advil. I'm sure a lot of women can relate. I never really thought anything of it at the time. Around that time I started noticing problems with my bowels, constipation for weeks then outbreaks of diarrhoea.
I went to my doctor who said I had a mild case of IBS. About two and a half years went by and I adjusted my lifestyle and eating habits as if I had IBS. Nothing seemed to help. I didn't put two and two together at the time until about the age of 23. I started getting mass pains in my lower abdomen and ended up in the ER about once a month. My family is not one to talk about their history so I had no idea what was going on.
In september of 2006 I turned 24. This is when all the troubles began. I am a science student at a local University and during the beginning of my semester found myself in the ER twice a week. I was vomiting constantly, in extreme pain all the time, dizzy and disorientated. The doctors told me it was just advanced stages of IBS, shot me up with morphine, and then sent me home.
One day at school in the University library I began getting intense stomach pains and dizziness. Instead of going home I decided to take action. I used my resources at the library to read documented scientific journals about different illnesses. I came across a disease called Endometriosis, all the symptoms fit. I made an appointment with my doctor the next day and demanded that I see a gyno.
When I went in to the gyno's office I told him I believe I have endometriosis and I need laperoscopy surgery. I was in for the surgery two weeks later. I ended up having to drop that semester of school which was probably the best decision to make. I went in for the surgery, recovered, and am current back in school full time as of Jan 2007. The problems I face, physically and emotionally, are always going to be there.
Currently I am on depo to stop me from having my periods and letting the disease progress any further until I finish my degree. This is a personal choice that I will have to live with. The pain that we go through having endometriosis is something that is life changing. I was misdiagnosed for 3 years, and now I am told at 24 that my chances of having children is next to none.
When the surgery was done there was so much scar tissue and damage. Endometriosis is a disease with no cure and the women that suffer from it are the only ones that know how hard it can be on us and the people in our lives. It prevents us from living a normal functional life without the relief of pain killers in the form of narcotics and emotional constant distress. There was a point where I not only hated my period but I was afraid of it, hence the depot shot.
Now, I have learned to live with it and hope that one day when my education is finished I might go on to have a family despite what the doctors say. To all the woman out there who know what it is like to live with endometriosis, I give you my warmest smiles. I know how it can affect ones self-esteem and confidence, not only personal but in all aspects of life.
I have been sick and conquered it once and I plan on doing it again and again. It might sound weird to say but having endometriosis has made me a stronger and wiser woman. I see life from a different angle, full of unexpected turns and obstacles that I am ready and capable of taking on. In a way I guess i'm thankful.
Tried many different drug treatments
I started having period associated pain around the age of 13 or 14. I would go to the nurse's office complaining of cramping because of my period. This became a monthly ordeal and I was told that I was being silly and how normal it was to have cramps with your period. I started to think that I wasn't believed. Like I wanted to just get out of school. That thought was unbelievable to me since I was a straight A student. Years went by and many doctors later....I had scheduled another doctor appointment (with a different doctor again) and before my appointment I got my period.
I was curled up on the floor, crying and in hysterics when my soon to be mother-in-law came in with Nyquil, trying to just knock me out. A week later I was at a new doctor. A doctor that believed I was in pain. What a wonderful feeling when someone believes you. The doctor said he thought I was suffering from Endometriosis. I had never heard of this, even after seeking a diagnosis from 10 different doctors.
I was scheduled the next day for a Laparoscopy and laser surgery if Endometriosis was found. Indeed Endometriosis was found and I was thrilled to finally know what was wrong with me not, knowing what the long road would be like. I was given a script for Lupron, pain killers and sent on my way. For two months I took the Lupron and it got to be too expensive since my insurance company wouldn't cover it. I was then put on Danazol. After Danazol I was told to get pregnant as soon as I could, that my Endometriosis was very extensive and I could have fertility problems in the near future. I tried to get pregnant, didn't happen. I then went on fertility meds, still nothing. Last resort was invitro. That didn't pan out either.
After all this I went back in for my next surgery, laser again since I was in pain again. Months later I was divorced with no children and no insurance. For years I was just using pain medication just trying to get by. I heard of the specialists in Georgia and contacted them. I was told I needed to send in my medical records. I called my old doctor for my records (many moons ago) and was finally told that my records were gone since it had been 7 years.
I finally figured out where I had my surgery and contacted them. They had the records for my first surgery. The records were sent to Georgia and Dr. Sinervo called to discuss the results with me. I was told that nothing was done to help me. I stated that I had two surgeries and laser surgery was performed. I was told that I did have two Laperoscopies, but both times no laser surgery was done.
I asked that he send me the pathology reports so I could look at them. I had never seen them, never thought to because I trusted this doctor who finally put a name to my pain. Upon getting the reports I was horrified. The reports stated that my Endometriosis was too extensive and penetrating to be helped. My appendix and numerous other organs were bound down, I had Endometriosis on my bowel and bladder (which I was never told) and many other things.
The one that got me the most was the fact that a tubal ligation was done and my right tube did not drain at all, and my left tube drained VERY slowly. Both my tubes were blocked. And the doctor left them that way and told me to get pregnant asap. This man took away my chances of ever getting pregnant. The report also stated that I had stage 2 Endometriosis.
Dr. Sinervo said after viewing the tapes that my Endometriosis was definitely stage 4, not stage 2 as the reports said. The doctors in Georgia told me that they could definitely and that's where I am today. Being self employed with no medical insurance I can't afford the surgery yet. My husband and friends are considering a fund raiser and if that does not pan out, I'll just have to keep waiting.
Diagnosed with infertility issues along with endometriosis
Excision surgery vs Change in Life style: Folks, I never thought I could have endometriosis. From 2001 we have been trying to conceive. That time I was 30 years old. I never had bad pain from periods, neither did I have heavy flow nor any pain during intercourse. I saw an OBGYN then. She did a series of blood work and found nothing. Then in 2002-2003 we did not ttc that seriously due to career priorities, although I was getting anxious over time.
I saw again another OBGYN and she suggested me to chart ovulation and try, but nothing worked. I was getting very frustrated. With very regular normal period, I should not have any problem. I got my husband checked also. He had good sperm count. In 2003 september, during the middle of the night I had severe pain in my lower abdomen. I felt as though my abdomen is going to burst. I asked my doctor and she suggested it could be pain due to ovulation. After that I continued to have moderate to high pain in my left side in the first half of my period.
In the meanwhile in 2004, I got my tubes checked by a doctor, he said they are open and the left ovary is slightly kinked suggesting endometriosis. I ignored him and kept on ttc. In Dec 2004, we did IUI and it failed. I was so desperate and lost. In middle of 2005 I saw an RE. He said I have endometriosis in my left ovary and wanted to remove it. I was almost devastated.
However, in a laparoscopy, he said the left ovary is badly glued to the bowel, so could not do anything and suggested a bowel re-section as well by an oncologist. I was extremely terrified then. Infertility and on the top of it all these problems. In November I went to an excision specialist in Atlanta(CEC), expecting them to solve my problem. They promised me that too. It was out of my insurance network, so I ended up paying out of my pocket which was a huge sum for me.
They removed my left ovary and said I had extensive scarring and retroperitoneal fibrosis. Meanwhile I was always having dull ache on my left side (towards back) and it was intolerable. He said that was due to retroperitoneal fibrosis. He said he removed all the scar tissue and I should have no pain. But, my pain returned on 6th day of my surgery from fibrosis. Followed by burning pain on my right side. I never had any pain in my right side before. The pain would radiate to my legs as well.
After surgery my period was getting worse every cycle. With just my right functional ovary, I was totally insane with this pain. When I called the doctors office, they said it may be due to persistent endometriosis (endo that was not removed) and if I want I can have another surgery with them. I refused it, not to mention the amount of money I would again need to spend. Finally I switched back to diet, Yoga, meditation and exercise regimen. Now I am pain free and during my periods I have bright red blood (Earlier it used to be brown and with lots of clots). I don't take pain killers anymore during period.
My Diet: I eat 2 servings of vegetable preparation every day with boiled rice. Once a week, I take mung sprout with raw vegetables. The vegetables I consume is mostly mustard family veggies (cabbage, cauliflower, mustard green), carrots, cucumber, beans, peas, cilantros, pumpkins, okra, spinach. I also take plenty of fruits like bananas, oranges, pineapples. I take fish twice a week with vegetables And drink plenty of water and take adequate rest. I walk 3-4 kms a day followed by Yoga for about 40 minutes. My yoga includes: sun salutation, head stand, shoulder stand, bridge pose, triangle pose, tree pose to name a few. I also do meditation and pranayam for another 10 minutes. Now I am completely healthy and pain free. I am waiting for another event in my life, i.e; to have a baby. Please wish me luck that I achieve this sooner. Best of luck to all and I will pray for you all. Anu
My endometriosis was not detected until was in the o.r. to get a hysterectomy (Nov. 2005). Three months late I had my ovaries removed and my endometriosis scraped. In August the same year I had Laparoscopy treatment. I also was receiving Depro Lupron shots at this time. In November of 2006, I went in to have more endometriosis removed (one hour treatment). The surgery turned into six hours. I had endometriosis growing on my intestines. The doctors told me they had to cut a lot of endometriosis out. I have continued to have trouble. I bleed daily. I started Depro Lupron again in August of 2006. It is now Jan. 2007. I am still bleeding and having backaches. It may be growing again.
DOES ANYONE HAVE PAIN MOST OF THE MONTH (much worse about 5 days before, during and about 5 days after their period) AND GET PROGRESSIVELY WORSE AND MORE FREQUENT EACH MONTH BUT NO HEAVY PERIODS OR PAIN DURING SEX????
My husband and I have been trying for over a year to get pregnant and every month, I am sad to find out I am not pregnant. My sister had become pregnant the first month she tried with both of her children so I assumed that I would have the same luck. I went off the pill in October, 2005 and started getting cramps about a week before my period in May. My doctor told me he suspected Endometriosis and sent me to an OB/GYN.
I am scheduled to have a laparoscopy next week (January 26) and am very hopeful that she will be able to get rid of the Endometriosis and my pains and infertility issues will be cured…. I am confused because I have pain virtually all month, not only during my period and I do not have heavy periods or pain during sex. I am not sure if that rules out Endometriosis. The pains are definitely worse a few days before and after my period and I get about a week of relief and then they start again, getting progressively worse daily.
This month, I had my period January 1 and was off work until the 5th and started feeling better. I had been feeling fine until the 16th and the pains are back, getting worse daily. I have cramps that vary in strength from tolerable to the point that I can feel it in my back and all the way down to my knees. I also have extreme shooting pains in the right side of my pelvic area. I was taking pain killers for the pain but became so constipated that I am trying to cope without pain killers for the pains until they get more severe.
I find it really hard because I feel so guilty for missing work and always feel like people think I am being weak. I love my job but I can’t imagine having to work a full day feeling that kind of pain. The pain killers take the edge off but then I feel sick to my stomach and then again have a hard time working. My husband has been so great – it has actually brought us closer together. I am so lucky to have his support. I also have a wonderful family that helps me cope. My sister is so good to talk to – I would certainly be lost without her encouraging words and concern.
I am trying hard to make the most of the times when I feel good and try not to feel sorry for myself. After reading the stories on this sight, I realize things could be so much worse. I thank God every day for my blessings and know that he has a plan for me. I am going to pray for you girls to get some relief because I just can’t imagine living with as much pain for as long as some of you have…Stay strong and God bless you…
Found a great specialist
Hello, I'm Shannon, 29, I'm pretty new to endometriosis. I was diagnosed this past year... it's all kind of a blur? I have always had painful periods, but all my friends always complained of pain so I thought everyone got the same type of pains like I had. I've always had abdominal pain even when I was not on my period, and definitely digestion problems!
In January of this year my husband brought me to the emergency room because of pains in my stomach. I saw my regular doctor and after countless appointments with no action I had a crying outburst in the office, I just could not keep taking off work to go to another exam where they couldn't figure things out! They finally did an ultrasound and found two complex cysts. She then sent me in for blood work- I forget the name of it now, but a tumour detection test. It came back elevated and told me about the possibilities of cancer- well I freaked, I had just been married, and we were just thinking of starting a family.
I found a specialist in Boston- he was fantastic! He told me that if you have endometriosis this specific test comes up with false positives. He thought definitely endometriosis, finally a definite answer- and he did a laparoscopy. Not a bad procedure if any of you have not had it yet, he found endometriosis widespread, but not too bad. Well going in for my follow up he asked who I had with me that day, I was there alone, it was just a follow up!
During the laparoscopy he had found malignancies throughout, he thought they were being spread from an ovary. He had a surgeon from Dana Farber waiting outside to talk to me... Dana Faber is the cancer institute in Boston. It was the most terrifying moment of my life! I had several appointments with her after that to discuss options. She did surgery again, about two months after my first and she removed my ovary. They put me on the pill, thank goodness that was it. I see them every three months, it's been about 6 months now and everything looks good so far, I have my next one in two weeks and I am planning on asking about having a baby... fingers crossed!
The doctors I have seen have been wonderful and upfront, however, it just seems like no-one can give me a straight answer about anything and I'm sure you all feel the same. I want to know why did these two things happen at the same time? Are they connected, did one cause the other. I know fertility will be difficult with endometriosis alone, is it harder with one ovary, and is the other ovary at risk now? Also, after reading everyone's stories, it has scared me! Is that what I'm in for,
I feel for you women, I feel I got off easy! And finally, had anyone tried the diet, I feel like the digestive problems are the worst symptom for me right now. The bloating, diarrhoea, constipation! It's awful! Any advice on that?? Well good luck to everyone and take care of yourselves! ~Shannon
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