Had surgery twice to date
Hi. I am a 20-year-old college student, and this is my story with endometriosis. Last spring, 2006, I was diagnosed with endometriosis. I bled for 57 out of 64 days, and had severe pain to the point where I could barely stand, let alone walk, which was accompanied by nausea and fever. I began to get frequent migraine headaches, rectal bleeding, and pain down into my legs.
I was so tired I could not stay awake and complete one day without a nap. On May 10, I had a diagnostic laparoscopy done, and it was determined that I have extensive/severe endometriosis. I had a second surgery on July 11 to treat it with lasers. They tried to treat me with Depo Provera after the surgery, but it caused a major acne breakout, which I am still trying to bring under control.
I don't know what to try next, but I know I need to do something to slow down the rate at which it will return. I was on birth control at the time I first became ill with endometriosis. I am afraid that nothing will stop it... I also need to find a doctor that can specialize in this condition. I know the battle is won, but the war is far from over...
Surgeries and lupron for treatment
Oh boy where do I begin... I am 26 years old and was diagnosed with endometriosis when I was 17, throughout my teenage years I had very painful periods always missing school because the cramps were so bad. I finally went to a gyn at 17 that is when the doctor decided to do a laparoscopy to see what was going on, well sure enough it was endometriosis.
He then told me that he scrapped it all out and I should be fine, so a year later I began having the same symptoms. So I went to another gyn, he put me on danozol, it helped for a while but made me soooo fat.
I was a senior in high school and to top it off I was a new student, I just couldn’t deal with it so he decided to do surgery so for the 2nd time. I went through with it thinking maybe this was it, but it wasn’t. After that he put me on the lupron which made the pain go away after 3 months.
I was good for a year or so. I went to school to be a medical assistant and had the chance to work in family practice. They hired a new gyn so I started to see him when the pain was back, so he decided to put me back on the lupron.
I did that for 3 months and no relief, so he decided to do another laparoscopy. When he was in there he saw something very strange and called a surgeon in to find out what was going on. He said my bowels were abnormal, so after scraping out what he could he sent me to a gastro doctor. I went through with the whole colonoscopy it was normal.
I stayed on the lupron for a year, it seemed to help for the most part, after I was done with it I started yasmin. I took that for a year, but then the pain started again. Our office had hired another gyn who was female, I thought maybe she would be more sympathetic, so she put an IUD in hoping maybe that would work, well it worked for a while but then stopped. I didn’t want to do the surgery again because I already had enough scare tissue from all the other surgery, so we decided that the lupron would be the best thing. I did that for another year and felt pretty good.
I left my job soon after that for another one, I was planning a wedding and it all started again, but this time my bladder was out of control, I was getting up between 2 and 6 times a night, my bowels were so out of control, I was in a lot of pain, extremely bad gas pains to where I was doubled over. I called my same gastro doctor that did my colonoscopy, he just kept telling me it was IBS (that’s what they all say). So he called me in some medication, I took that and also took activa which made it worse.
I just couldn’t take it any more. I was getting married in 2 months and I felt like I was falling apart. I met with my gyn and we decided to do surgery, wondering is this all in my head or what, well it wasn’t, I had endometriosis. There was something else that was abnormal again so she called in the surgeon.
My appendix was in the lower abdomen so they removed it. 1 week later I followed up with the surgeon, I asked him what the operative report said. He said that he had never seen it before but it was filled with endometriosis, I was so shocked. I thought where else could it be, is that why I am having bowel and bladder problems, but still yet everyone said no.
So here I am on the lupron again after the surgery, it was that or have a baby. I wasn’t married yet and I didn’t want to be pushed into it, I just wasn’t ready, so we went with the lupron. I am in my last month of lupron, and we are ready to have a child. I spoke to my gyn to find out what we needed to do, she said just wait until you have your period. I don't know if its that easy, we have recently moved states, so I don't have a doctor and I am scared that its not going to be that easy.
I don't know where to start, I don't want to go through with the pain again, and I know if I don't get pregnant right away it will all come back. Then it will be even harder to get pregnant, and what if all the medication I have taken has made it to where I can't have children. I am scared and don’t know what to do. I haven’t found a doctor yet that understands, they just want to give me medication or do surgery, I just want answers, I am so frustrated. What do I do????
My name is Cody and I have suffered for endometriosis for 15 years. I always had painful and irregular menstrual cycles. In the beginning of my journey I went to several different doctors. None of them could tell me what was wrong with me. I finally found a doctor that suggested laparoscopic surgery. The surgery was meant to be just a laparoscopic procedure until they entered and saw what a mess my insides were in.
I woke up to my doctor telling me they made a large incision on my bikini line to go in and separate all of my lower intestines. My uterus was adhered to my bladder, and the lower intestines were adhered to my ovaries. To top it off my ovaries were covered with cysts. It was the worst case they had ever seen. After the surgery I went on the lupron shot. For three months I endured the horrible side effects of this drug. Three months later I got pregnant with my first daughter.
The pregnancy went smoothly until I found out I had placenta previa. All the scaring caused my placenta to stay firmly planted at the bottom of my uterus. I started to hemorrhage 7 weeks before my due date and had her by c-section. Everything was great for about two months. The pain started coming back this time it was worse. I went back to the doctor to discover that I had two large cysts one of them the size of a grapefruit the other the size of an orange. I had to have surgery to remove them. This being the third cut it didn’t help with the scaring.
After the surgery my husband and I felt it was time to try to get pregnant again. I got pregnant again with my second daughter. I feel really luck that I was able to have children. I had her 9 months ago and the endometriosis is so bad right now. My pain is back and I am looking into natural cures. I don’t want to get a hysterectomy being only 28.
I will have to take hormonal replacement. I have been told that a hysterectomy was an option but it didn’t always get rid of the problem. I hope me writing this will give some of you hope that you will have children. Thanks Cody Pinzon Sugar Land Texas
Having had the same gynecologist since i was fifteen, he diagnosed my endometriosis rather quickly. On a scale of 1-10 of pain, my ten day long periods have at least 2 days as a number 12.. unbearable pain. We tried numerous types of birth control.. the shot, ten different types of birth control pill.. nothing worked.
As you can imagine, taking over the counter anti-inflammatory pills did absolutely nothing. I have lost jobs over this.. no one wants an employee that cannot come to work 2 days a month. Isn’t there a way to treat the pain with some kind of medicine that actually helps? I am only 28 and want children and the thought that this is just going to get worse, like it has for the past 12 years.. is just unbearable.
Ever since i was 13 I have experienced extreme pain during my periods. I first went to the doctors when I was 15 and I was told that my pain was normal. I suffered more and more so eventually I was put on the pill, this didn't help so I was put on various other medications to try and treat it, before finally at the age of 20 being referred to a gynae.
She knew immediately what was wrong with my list of symptoms: painful heavy periods, bowel problems, painful intercourse, migraines, insomnia and complete exhaustion. She booked me in for an emergency laparoscopy and I was diagnosed with endometriosis on the back wall of my womb. It felt as if a great cloud had been lifted because I finally knew what was wrong with me. At the same time I also feel very alone because I have no support because no-one understands what's wrong and how it affects my life.
I feel better knowing that there are others out there with the same condition. I'm now waiting to see my gyn. to determine a course of treatment, if anyone has any advice to offer I would love to hear from you. Thanks Mags x
Endometriosis throughout abdomen
ENDOMETRIOSIS - THEY ALWAYS COME BACK!! I feel for all of you and myself too. I am 27 and was diagnosed 4yrs ago. Of course it was after going in and out of Hospitals, Doctors making me think I was crazy because they could never see anything on any tests I had. They thought I was some addict just wanting pain pills.
Actually in some recent article I have read that people with CHRONIC pain are often labelled as drug seekers when in reality all they want is some form of relief from the pain!! I have had two laparoscopies. The first being diagnostic, meaning they saw it all in there, in all 5 places - uterus, ovaries, fallopian tubes, bowels and bladder. Left it in me and put me on Danazol.
Wasn't it fun going through menopause with my grandmother at the age of 24. The weight gain and hot flashes. I had enough of that and was then put on the DepoPrevera shot, 200mg/month. Felt some relief at first, but then of course it didn't work anymore and my boobs started to leak. Every kind of medication I tried usually worked for the first bit then stopped. After my second laparoscopy in Jan 04, I felt absolutely fantastic!! For a whole 2 months.
Went back to the gyne and he in a nutshell told me there was no way I could possible be having pain. Basically, every doctor made feel like I was crazy. We all know our bodies and know what feels "right" and what doesn't. I have learned to never ignore your signs/symptoms. Do all the research you can. So I will share what I have learned........
It doesn't matter what medications you are on, how many surgeries you have, and by the way the more surgeries you have the more scar tissue they leave, which also cause a great deal of pain too. It doesn't matter if you have a partial or total hysterectomy........ The ENDOMETRIOSIS (gremlins, I like to call them) always come back. You may even have some relief for years, but, it will come back.
Endometriosis can only TRY to be managed. I also suggest if you have endometriosis to have other things checked. When you have endometriosis, you will most likely have something else along with it. I now also have PCOS - Polycystic Ovarian Syndrome. Increased male hormones, it in itself causes extreme weight gain, rapidly and mostly around your mid section. Hair falls out, dark patches of skin around your armpits, elbows, neck and ankles.
Many other symptoms too. I would suggest to any women with ENDOMETRIOSIS to have complete bloodwork done on ALL your hormone levels. Other women have fibroids. Again, with endometriosis there is usually another monster lingering inside there too also causing problems. Get books on your specific problems and try to follow the diets they suggest.
With endometriosis and PCOS, the diets contradict each other??? So, I eat whatever. I do notice now with DAIRY, after I have any kind of Dairy product I'm having pain right after!! With endometriosis they say to avoid Dairy, Refined sugar, meat, and pretty much anything we all love to eat is bad for us. So for me, I take my birth control pills continuously to avoid my period because I feel like I'm dying if I have one.
I take pain pills daily along with an antidepressant. Let's face it, this is not easy. Don't ever let a DR. decide for you what to do!! Talk over with your loved ones your options and decide what's best for you. We are all different and one cure that works for me may not work for you. Getting pregnant has been suggested to me many a time. However, I want to have a baby when I'm ready to be a parent, not cure an illness.
Yes, I want kids, so does the man in my life. We want to do it right. Even if getting pregnant is a cure for endometriosis... how long is it going to last??? How many babies do you have to cure yourself??? Do what's right for you!!
Improving health using natural treatments
I found out I had Endometriosis about 2 years ago. At the time I did not realize how serious it was - I only knew that the cysts meant I had to cancel my flight to Israel where I was planning to work and travel for 5 months. Find a new job to replace the one I had just quit and find a place to live as I had already started moving out of my old place.
To make a long story short, I got surgery to remove a cyst from inside each ovary - one 6.5 cm and one 8.9 cm. They cut the ovaries open, took out the cysts and sewed them back up. After the surgery I had a lot more pain during my period than before and my period became irregular (I had always been extremely regular before that). It was then that I started looking into more natural solutions, and found this website.
As a result, I quit eating wheat and dairy (I had been told 10 years earlier by an allergist that I had an intolerance of some kind but had found it too difficult to cut them out of my diet so had just cut down slightly on my consumption of them). I also started experimenting with various vitamins and herbs. Right away I noticed that I no longer needed to take any pain killers for my period. I still had pain and discomfort but I could deal with it if I spent one day a month at home or was in a job that involved a lot of movement (as movement for me alleviates some of the pain).
This reduction in menstrual pain was a miracle! I still mourn that I treated my body so badly with so many pain killers when there was a better solution. Prior to this, for 10 years or so I had worked my way up to often taking twice the maximum recommended dosage of Extra Strength Advil every two hours for 2-3 days. I knew this was creating problems in my stomach and that I had to find another solution.
Around this time I decided to go ahead with my prior plans and went to Israel 5 months. Two months into my trip to Israel I was told by a doctor there that I had another cyst, as big as one of the ones that had just been removed - 6-7 cm. I was devastated. I sat on a field in a park and cried for an hour. I then called a friend who helped me gain perspective and went on with my life.
By this time I was getting more exercise, still staying away from wheat and dairy and was experiencing a lot less pain each month. Occasionally I would start eating wheat and dairy again and the pain would come back but seeing the difference was enough to motivate me to go off it again. I returned to Canada and found out from more tests that I had not one but two cysts in my left ovary and that I had a fibroid cyst on the wall of my uterus. More tears. More loss. More disappointment.
I had a number of people plead with me to go on the pill to suppress the Endometriosis but I feel instinctively that this is not the solution for me. I began reading more and finding more natural solutions. I printed and followed almost all of the advice from the cookbook from this website, started taking herbs, vitamin b12 (sublingual), estrosense and various other things recommended for endometriosis.
I also got some tests done in a naturopathic clinic that showed I have sensitivity to a number of foods: eggs, cinnamon, shell fish, avocadoes, and a few other things that I really like. I now stay away from those foods and rotate a lot of the other foods. I have found that, while I am not OK with wheat, I am fine with spelt and rice flour so I have been able to find a lot of substitutes. So far, the results have been very good. I now have almost zero pain when I get my period;
The last two times, I didn't even know I had it until I saw the visual evidence. I am grateful, grateful, and grateful. The last time I got an ultra sound done it looked like the cysts had shrunk by about 1 cm. I am not sure if that is something to be hopeful about at this point as it is such a small amount.
I am going to get another test done in a couple weeks and see what is going on now. I am also planning to start acupuncture therapy from a highly recommended acupuncturist in my area as I now have medical coverage that will cut the costs of this a little.
I am hopeful that with persistence, with the experience and stories of others, there is a solution to Endometriosis and I wanted to share my success so far with others. I also want to thank Carolyn for this website. I downloaded her book and read the entire thing in one day.
I cried several times as I could relate so well to various parts of her story: the way you feel in the doctors office when they tell you all the implications of this condition, the sense of social isolation that can result at times and the financial strain that is a factor for many. Thank you Carolyn and thank you God for helping me to accept the things I can not change, to find the courage to change the things I can and the wisdom to know the difference.
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