My name is Sarah and I was diagnosed with endometriosis on July 18,2002 after my first lap, 2 days before my 21st birthday. This is my story.

I felt that undescribable pain for the first time when I was 12yrs old. My mom rushed me to our family doctor who told us I had cysts and put me on pain killers. For 4yrs I fought painful periods that would cause me to miss school and pass out from pain. Not to mention the everyday pain and fatigue. Finally at 16 the 3rd OBGYN I went to see put me on birth control and differnt pain meds. This seemed to help for a while, but I was still missing school. The pain was bad, but the fatigue was the worst. While my friends were out having fun, I was home sleeping.
My sophmore year of college I ended up in the emergency room after a large cyst burst. My 4th OBGYN put me on antibiotics to clean out the leftovers. When the pain never subsided she did an ultrasound, couldn’t see anything ,and told me I might have cancer! Then, when those tests didn’t come out she basically told me she didn’t know what was wrong with me, and maybe it was all in my head. Fortunately I met a girl at college that had been diagnosed with endo. She told me about her symptons and I was thrilled! It sounded JUST like I felt! After looking for a doctor for 3 months I found one back home who would at least THINK about me having ENDO. However, she informed I was TOO YOUNG to have it! She put me on a different birth control and new pain pills which seemed to work for almost a year.
After that year passed the pain gradually came back and became more and more crippling. My doctor refused a lap and so I switched again. This new doctor met with me once and scheduled the lap for a month later. The surgery went great and she removed several large patches of endo on the top of my uterus. It had even glued one of my ovaries to the top of my uterus and she seperated them.
5 months later I was pregnant, while on birth control. Unfortunatly I miscarried early on. For some reason after the miscarriage the pain came back over 3 months time. Now I am fighting the uphill battle all over again. Last month I started on Depo. I actually have already had less pain, but it’s still there and somedays…bed and painkillers are my only option. I had trouble with bowel movements and my doctor refuses to anything else right now. I’m getting frustrated again, and I’m SO tired of switching doctors!
I think, for me, the depression, fatigue, and lack of understanding is the worst part. If I had a illness that you could see visibly there would be SO much more understanding. My family tries to be understanding, but it’s hard for them to grasp what I face everyday. My fiance left me before we even knew I was pregnant just because he didn’t want to “deal” with it anymore. I’m grateful for a site like this where I can go and not feel so alone. Thank you for all your stories and advice.

hi my name is amy, im 22 and this is my story.

June 2004, i experienced a break through menstral bleed and was bedridden in serve pain. Once the bleeding stopped the pain continued to worsen. For the next month i was treated for every uterine infection under the sun, and after one month of constance antibiotics i was sent to my local gyno clinc. 2 Weeks later i had a laparoscopy and i was found to have endo. I had fresh and healed lesions in both my uterosacral ligments, deposits in my pouch of douglas and a patch to the right of my right uterosacral lig- it turns out it its this patch which is causing the most pain. The doctors burned what they could and when i woke up i was told i had endo, dont leave having kids too late and that was it. I have now had to quit my medical degree at uni, and for the last year i have faced each day in pain. Some days the pain is so bad i’m bedridden, other times im admitted to hospital.

It turns out i have had this disease since i was 14 and each time i complained to doctors about painful periods they told me to toughen up, which makes me want to scream since i have an extremely high pain threshold.They even took my appendix out cause they thought that was the cause of my pain when i was 18.
After my operation i began receiving a monthly depo-provera injection which caused more problems then benefits. My hair began falling out and still is, i experienced severe bouts of depression, intense back and leg pain, i began lactating, i developed an extreme case of acne and put on 20kg in 2weeks and i was going to the gym!!! I have to admitted not having a period was nice, but the pain didnt improve. So this yr i beagn taking zoldax, my breasts have gone from a nice c cup to a double d, the stretch marks on my breasts are really depressing, my acne has gotten worse- which is terrible because i was lucky enough not to have it during my teens. Ive put on a few more kilos and after all this im no better off.
Today i have been referred to a specilist in sydney but thats a 2month wait, and they are telling me they are going to do another laparo but this time cut out the deposits. But they cant guarantee this will work. I asked the doctor today what happens if it doesnt work and she looked at me and said long term pain medication.
So tonight i sit here ready to scream, knowing my uni career is slowing slipping away from me and facing a future of constance pain. I need some help from someone who really understands what im going through. My fiance has tried to be supportive, but the whole no sex thing is really causing him some grief. I dread the words do you want to fool around because each time we try i end up in tears, in agony and this is a minute into the whole ordeal. I feel fat, unsexy and seriously not in the mood and i wish he’d understand.
So plz if anyone can offer some help, words of advice or a shoulder to cry on id be forever grateful. Amy

I recently had a Ultrasound, and it showed a cyst on my last remaining ovary. I had a hysterectomy last year (one year ago). The cyst is normal size, but I have severe pain. The Doc. seems to think the endo is back.

He put me on a MILD scrip, which doesn’t work, and he won’t prescribe narcotics. I am faced with my family going through my pain again, and not being a mom, like I want to be. It isn’t fair for them, that I have this, nor my husband. He is frustrated. I don’t know if I should just have the last ovary removed at the age of 29. I want it to just go away. I heard that if you remove everything, and go in to menopause it should cease. Is that accurate? I could really use some help and advice. Please email me – coachkm03@yahoo.com And thank you!

My name is Jaymie i am 22 and have suffered with endo for a very long time now. My periods were always painful, painful to the point that i would crawl up in a small ball on my bed and cry for hours.

WHen i was 19 the pain grew so bad that i found myself in the ER every second night. In order to deal witht he pain i was given morphine, and perceset, and the number of tests i had was unbelievable. I had CT scans, Hyda scans, ultrasounds, blood work, ect. At one point for 2 years the doctors told me that the pain was all in my head, and sent me to a psychiatrist to deal with the issues in my head. I was put on antidepressants, and was told that i did not deserve anyones help, because all i wanted was the drugs which they chose to stop giving me because they thought i was a perscription drug user.
For those 2 years i suffered with debilitating pain, i had to leave work and suffer all alone. I truely was alone, no one knew what i was going through, they could not see my pain, infact i became a master at hiding my pain. It took a long time to find someone who would even take the time to speak to me without turning me away, until i found an STD specialist who did an internal ultrasound and found something abnormal, the next day i received a phone call saying that i was to go into surgery for a lap to find out what was wrong.
The day finally came, and when i returned to the gyno’s office and i heard the words ENDOMETRIOSIS pour from her lips my biggest fears came true. That was 1 year ago, and to this day i still find myself hiding my pain, there are the few in my life who say they can see right through me, however they will never be able to understand. That is why i have come here. Where i live, there is no endo facility, knowledge, or support groups where i can find someone who understands. I come seeking one person who can look into my eyes and say, “dont worry, i know, and you are not alone.” Even though you cannot see the disease by looking at me, it is there and it is real

My own story of Endometriosis is SO different……Please, please read, and let my message give hope.

The content and final outcome of my own story is a stark contrast from that of so many women around the world who suffer from this devastating disease.

The content differs because I did not go through the rounds of drugs, tests, operations, false hopes, mis-guided information, more drugs, more pain, worsening symptoms ….. need I go on; because so many of you know and experience this scenario – year in year out. It is utterly heart breaking.

The outcome of my story was based totally upon my absolute focus and conviction to get well, to get rid of Endometriosis, to banish this disease from my life. And I did. I took the slow, steady, gently, and natural way using alternative therapies and LOTS of positive thinking. And the final outcome …… I did beat Endometriosis, and it never returned. It is nearly 10 years ago that I was given proof that I had beaten endo, by a visual inspection of my internal organs, with a laparoscopy, and the gyne said there was NO active endometriosis and that it had all dried up.

The reason for my second laparoscopy was based purely on a very strong intuitive feeling of the need to be checked internally. I felt something was amiss but I had no idea what, and I had no symptoms. In fact I was fitter than I had been in many years. During the operation one cyst was found on my ovary and treated, but like I said, all the other cysts and signs of Endometriosis had simply dried up.

My homeopath told me that this last cyst was the last physical evidence, the final manifestation of the disease. It was as though all the toxic debris and residue of endo had been moped up into one place, ready for the final treatment. My intuition to get checked internally despite feeling really fit and well, was so strong and would not go away. I tried to ignore it, knowing how fit I felt, but in the end my intuition was screaming at me.

I had worked with my homeopath for 4 years and together we went through ‘layers’ of healing, finally getting to the root causes of my ill health and Endometriosis. The disease was finally laid to rest with the support of homeopathic remedies and many steps I took to help myself. The final cyst on my ovary was the last ‘process’ in my healing, strange as that may sound. This cyst made my intuition kick in, which enabled me to get this last physical evidence cleared up once and for all.

Therefore, it wasn’t simply a case of ‘feeling better’ because my symptoms had subsided, and mine was not a case of simply going into remission, which is the term the medical profession would prefer to call it. I know at a gut level that I was healed. Totally healed.

When I had my first diagnostic laparoscopy, my gyne told me that I had the worst case of Endometriosis she had ever seen – so it is not as though my healing was easier or simpler or quicker because I had a mild case of Endo. No, quite the opposite. I had cysts all over my abdominal cavity and was advised to a have a total hysterectomy.

I have been reading so many desperate stories of women whose lives have been totally devastated by this disease. One woman had actually been omitted into hospital over 100 times. Women are cancelling entire chunks of their lives because of this disease. Many women are opting for a total hysterectomy in a last ditch attempt to gain relief from this disease. Millions of women are in despair of gaining any relief from the pain and agony associated with endo, never mind hoping to be cured or healed.

Which is why I am giving a brief insight into my own story – to give women hope and to spread the word that a ‘cure’, healing, remission, whatever you want to call it, can and does happen. There may be a few successes for women who choose conventional drugs and surgery to treat their endometriosis, but they are few and far between. The best successes are for those women who use natural and alternative treatments.

This is because using natural therapies are natural, and they enable your own body to do the healing by using your immune system to full force. Alternative therapies help you do this by strengthening your immune system. There is not one alternative therapy that does the healing for you – what they all do, without exception, is to help you to heal yourself. Ask any alternative health practitioner, and they will confirm this statement.

It does not matter if you use Homeopathy, Herbalism, Traditional Chinese Medicine, Acupuncture or whatever – they all work to the same basic ‘principle’; that healing comes from within, and any alternative therapy helps the patient to help themselves.

Deciding which alternative therapy to use is down to personal choice with a mixture of finding a practitioner you ‘click with’, combined with a therapy that suits you. For example, if you do not like needles then Acupuncture will not be for you; if you do not like taking strong tasting concoctions, then Herbalism may not be for you. Go for the therapy which ‘feels’ right for you, and it will be right for you.

The other reason why alternative therapies are superior to aid healing is because they are permanent, not temporary, as in the case of drug treatment. As soon as drug treatment is stopped then the symptoms of endo come rushing back with vengeance.

I do read stories of women who have tried different alternative therapies and have felt let down. They have only felt limited benefit from the therapy they have chosen. In every story I have read of women who have ‘tried’ one of the alternative therapies, and have not had total success, the limiting factor has been the time span. These women have not given the therapy a chance to work. They may have only tried a regime of homeopathy or herbalism or whatever, for a few months and then given up because they were not seeing significant improvements.

My own time scale with a homeopath was 4 years – not 4 months. I was committed and determined, and my homeopath forewarned me it could take a long time to get well. But I felt that the ultimate long term benefit of total healing was far better than temporary respite. Therefore, my advice is to see any treatment using alternative therapy for endometrisios as long term (but not permanent).

People are so used to the idea of a quick fix for things in life, especially with modern medicine. We are all so impatient. But if you body has taken years to become dis-eased then it will take a long time to repair the damage and get the body back into equilibrium and balance.

To emphasise my positive message, in my research for my own book and my website, I have started to find stories of other women who have successfully obtained healing from this disease. In almost every case, these women have achieved their healing through different forms of alternative treatment or diet changes or a combination of self help techniques.

This has been more of a positive health and healing story rather then my own personal story of healing. The aim of my communication here is to provide hope that there are other possibilities to gain healing of Endometriosis. Evidence is mounting that it is possible, by the growing numbers of women who have achieved it.

The medical profession is not the ‘be all, and end all’ of health care for the human body. The medical profession is a relatively new phenomenon in the time scale of human society. Throughout history we have used herbs, healing, and essential oils. The practise of acupuncture goes back centuries; massage combined with oils goes way back in history.

Modern medicine is driven by pharmaceutical companies. There are very few doctors who develop new treatments for any of today’s illnesses and diseases. It is the drugs companies who develop new treatments in the form of new drugs. And guess what, that means more profits! I admit that there have been some wonderful developments in the field of medical surgery with the use of clever, and less invasive surgical techniques, like laser surgery and fibre optics, and many lives have been saved.

But when it comes to treating and healing diseases then modern medicine goes in with a sledge hammer, and does more harm than good. There are the dangers of side effects, some of which are permanent and very damaging to the body.

Your body chemistry is very delicate and the most delicate chemical system is the hormone system. We all know that endometriosis is fed and activated by hormones. In the human body, it takes only microscopic amounts of any given hormone to have a powerful and cascading effect in the body. These hormones are very potent, and yet the very treatment being offered for Endometriosis by modern medicine is synthetic hormonal drugs, which will obviously throw the body into disarray and upset a finely tuned orchestra of natural chemicals in the body.

Please be kind to your body. Healing yourself is simply a matter of being committed. A total commitment to change the way you are doing things. Do not leave it up to others; take control of your own health. I did, because after I heard my treatment options from the gyne, and compared that to the treatment potential using natural therapies, I knew I had no choice.

If you wish to find lots of positive advice about healing of Endometriosis visit my website at http://www.endo-resolved.com/index.html Your feedback about the site is welcome, as I am continuously aiming to improve the site.

I am a 29 year old mom, wife, NICU nurse. I have been living with endo for approx 18 months. I am coming to the breaking point with this disease. I will start from the beginning:

I have had one biological child in 1997. I developed pre-eclampsia at 27 weeks. We held off delivery until 31 weeks. I was on strict hospital bed rest. I am an NICU nurse so my fears were huge. I have since had issues with hypertension. I was scheduled for a tubal ligation one year ago because birth control was not an option for me. The desire for me to have a biological child was not that strong. We have adopted since then. My periods had been becoming increasingly painful. I had spoken with my GYN MD about this. He descided to do exploratory surgery with the tubal.

Well once in surgery my MD found 2 areas of endo inutero and 2 in the pelvic cavity. He hoped with the lap that all of the sites were taken care of for the time being. Well the lap worked for 4 months. By Christmas time of 2002 I was in so much pain that I was vomiting. Tylenol with Codeine was not working. I was not able to work… Which was very difficult for me. I love my job. I could not function as a mother, wife, lover etc….

So my MD wanted me to try Lupron injections. I was willing to try anything by this point. He kept telling me we were not going to do anything drastic (hyst) because of my age also he wanted to be sure we were dealing with the same thing again. I got very frustated with him because here I was in agony effecting my whole life and he is telling me to hold out. I work with this Md on a continuing basis with my job. I trust his judgement but I was beginning to have my doubts. The first month did not show any relief. I tried one more month of injections and proceeded to get a 2nd and 3rd opinion. This was hard for me to do because of the trust and respect I have with him with my job. All the MDs felt the I should see if the injections worked for one more month. Well they did!!! I got injections from January until June. I began to have bone density loss so I had to only do the 6 month cycle. Also my body was becoming “immune” to the injections.

So here I sit….. I am now taking 30mg doses of Provera. I have now been taking this for 3 weeks. As of two days ago the same exact symptoms have started with increased pain. I am back to using the tylenol with codiene when i can. No bleeding, but everything else that acts like a menses of before. I have spoken with my MD at length today. I am going to increase my Provera dosage but he utimately feels the next step is a hyst with ovary removal. And then explore to see were in the pelvic cavity has any sites to burn. I feel this is a tremendous step for him to say.

But I have done alot of research. I have my doubts about this being the next step due to alot of women not getting relief after this. My husband is worried sick. Our love life is next to nothing for the past month. I find it very sad that my 6 year old said to me yesterday :Mom you are not pink anymore. You look like Casper (ghost). Are you sick?

Does anyone else out there have any suggestions? I want to have all the information or paths they have taken that I could try. I don’t want to make a hasty desicion. Also being a nurse, I want as much proof as one can get………

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Comments:
I read your story today. You said something about your doc wanting to “burn” if there is anything in the pelvic cavity. Research shows that ablation is the best way to deal with the endo because the tissue is actually cut out, as if to remove the root. Think of it as finding a black spot in a potato. The best way to get rid of it is NOT to use a peeler, and just scrape the layers, but to dig it out, thus making sure that you remove the entire spot. I’m not sure if you are aware of this process, but I would highly suggest you look into this, and see a doc who practices this. Also, please do not worry about hurting your doc’s feeling by seeing a different doc. This is about you and your health. If he can’t accept that you go elsewhere, I would question why I would put my health in his hands. Feel free to contact me. I am involved with the ERC.

My name is Nadine. Here I sit in my tiny apartment in a narcotic stupor. Tylenol 3 with Codiene, one every four hours around the clock. Aleve doesn’t work any more. A nightgown is my constant wardrobe now. My left side and abdomen hurts too much for pants. Besides, the gown makes it easier for the frequent runs to the ladies room (bladder pressure).

I am a newspaper reporter, but I haven’t been able to work for weeks. Thank God my publishing company has a generous, short-term disability plan. It will pay 100% of my salary for six months while I’m out of work. I only have six months to find out what’s wrong with me and get better. I am frightened that I will lose my job. It’s a 10-year career at stake. My gynecologist suspects endmetriosis and has scheduled an exploratory laparoscopy and hysteroscopy for Aug. 7, 2003. A second surgeon will attend to repair my belly button, which herniated or popped out a few weeks ago. They suspect that there may be a section of colon adhered to the belly button. They plan to place a piece of mesh behind my belly button for support when the surgery is complete. This started about three months ago with mild lower back pain and a swollen abdomen. My white blood cell count was elevated to about 15 and lab tests revealed traces of blood in my urine. We checked my records for the past several years and I have never had blood in my urine. I couldn’t get comfortable in any position except standing. Then my left side started hurting and I developed a small lump just under my left rib on the abdomen. It went away for about a week, came back then went away. When it came back again, it was much worse and the pain eventually grew to an excrutiating level and I had to stop working. I’ve had both a vaginal and abdominal CT scan, vaginal ultrasound, colonoscopy and IVP, all were clear. We didn’t make the potential endometriosis link until my general practitioner said this was acting like an infection or cyst in my fallopian tube or ovary and she asked about my periods. About a year ago I had two episodes of vaginal breakthrough bleeding inbetween periods. Since then, my periods have become very painful the week before menstruation and the first couple of days of menstruation. They have become very heavy as well. When I am menstruating, every time I sit on the toilet blood and large clots drip into the bowl. I used to have my period about every 28 days like clockwork. Now they are coming every 23 to 26 days and last for five to seven days, where they used to be a short three to five days. Sex has been painful for at least six months now and after sex I have what feels like menstrual cramps. When I visited my gyn about a year ago about this he said I was getting older, the body changes as you get older and I may even be beginning early menopause. It was nothing to be concerned about, he assured me. When I saw him three months ago about the lump and the pain on my side and abdomen, he said the pain was up too high and sent me to a gastroenterologist. That specialist found no problems with my colon. After my general practioner mentioned my periods, I went back to my gyn and he said we needed to “get in there and see what’s going on.” If I understand correctly, he will check my uterus area with a scope (hysteroscopy). For the laparoscopy, he will expand my abdominal cavity with a gas, make three small incisions in my belly, insert a scope and search for any endometriosis spots and for any cysts or tumours, etc. If he finds any he will cut and remove them, unless they are attached to critical areas, such as the colon or bladder. He has warned me that laparoscopy may not get all the lesions, if there are any, and that many women ultimately require a hysterectomy, which he said has a high cure success rate. I’m 41. Both of my children are grown and I do not wan’t any more children. I had a tubal ligation 16 years ago. I asked him if he found endemetriosis if he could just go ahead and perform a hysterectomy. I want to knock this thing out and get back to work. He said he could but that insurance companies generally won’t pay for it unless laparoscopy and medications don’t work. I’m a little frightened about the surgery next week. The doctor said the pain should not be intolerable and I should recover in a few days. Still, it is surgery, there will be pain. I’m sure it will be complicated by the herniated belly button repair as well. My poor boyfriend. We live together. He has had to go without sex for so long. I thank God he sent me an understanding man. He’s been great, done all the cooking and cleaning, the grocery shopping, everything. At my son’s graduation ceremony, I could not walk from the car to the auditorium. I cried through the ceremony and everybody thought I was being sentimental, but I was crying because I was in pain. I didn’t want to spoil the event as we had family come in from all around the country. My mother had a pacemaker put in last month and I went to Georgia to try to help her with her recuperation. But I had to leave the day after her surgery because my period started and I was hurting too much to help her. I really feel quite useless right now. But I am praying that the surgery leads to a diagnosis and, ultimately, an end to this pain. I plan to update this after the laparoscopy to let you know the outcome. I may not have endometriosis. But I think it is important for all women to know that painful sex and debilitating menstruation is not normal and should be reported to a physician.

Re: SCHEDULED FOR LAPAROSCOPY
by Ariadm

Hi Nadine,

I read your story with interest and I apologise if my response sounds blunt.

First of all – a hyst is in no way a cure for endo – many women who have adeno no longer have problems after a hyst, but for women who have endo at least 90% of them continue to have problems. Endo doesn’t need the ovaries to produce food – it makes it own. If you have a hyst, but you have endo on the bowel, bladder, ureter, etc. the endo doesn’t go away – it stays there and can cause a lot of problems.

Second – it’s very possible to remove endo from the bowel, bladder, ureter etc etc as I’ve had that done by a top endo specialist in August 2001 and I’ve been pain free since.

Make sure you rest a lot after your operation – whether it’s a hyst or a lap. Why is your doctor not going to remove endo he finds on the bowel or bladder? Could he not work with someone who can do this for you?

I really wish you all the best and I hope the surgery does work for you. Please keep us updated, and you’re welcome to post any questions you may have on the forums.

*HUGS*
Arianna

Re: SCHEDULED FOR LAPAROSCOPY (Score: 1)
by nadineparks
Arianna, thank you so much for your response. It is very comforting to know that I am not alone at a time like this. It is very difficult to talk to friends and family because they dont really understand what I am going through. So to have an caring and empathetic ear is very comforting. I guess we’ll have to see what the laparascopy reveals. If I do have endometriosis, I plan to find an endometriosis speciliast. I am in Charleston, S.C. Can anyone recommend a reliable, compassionate specialist in my area please?

Re: SCHEDULED FOR LAPAROSCOPY (Score: 1)
by EvaAnn
I have just found this website and read a few comments – Yours peaked my interest. I have lived with endometriosis for 8 years and it has been progressivley worse. The medications dont work anymore – either to minimize endo or to treat the pain. The laporoscopy didnt do anything. The specialist wants me to consider a hysterectomy – we are not having more children. I am hoping to find success rates for a hysterectomy as treatment for endo. What can you share with me as far as the likelihood of symptoms after surgery?
Thanks

Re: SCHEDULED FOR LAPAROSCOPY
by JenBison

Wow. First off, I wish you all the best. 2nd, I’m still new to this endo thing and didn’t realize the bladder thing was part of my symptoms. I’ve been going a lot more frequently lately. Also my periods: I, too, used to be every 28 days like clockwork. Then I started with the pain and the gyn put me on the pill. And then my period got messed up. I thought it was something to do with the pill. Anyway, I’m also having a lap. I was supposed to have on 7/28. I got all the way down to the Surgery Center and was told the laser was not working. The repair guy was coming later that afternoon, but didn’t know if he could even fix it that day. So I called the Dr’s office and the lady who schedules surgery was quite pissed at the surgery center. The upshot of all this is my surgery got rescheduled for 8/11, which is today! I’m very nervous.
But anyway, thanks for letting me know some of these symptoms are normal, and not just me. And I hope everything works out for you. 🙂

Today is the 29th May and yesterday I found out that i had endometriosis. I cried to start of with then went numb I havent felt a lot since. I am getting married in a year, and had planned kids soon after that so this has come as quite a shock. I had a laporoscomy to see what years of painful periods erregular bleeding and pain during sex was infact endo or not. The gyno didnt speculate but told me i shouldnt worry that it might not be anything, but i will never forget the look on his face when he came to tell me. I think the person it has hit the most was my mother we are very close and she broke down in tears and went to tlk to the gyno without me. It turns out I only have 4 spots and he burnt then, though i apparently have a 60% chance of them growing back and having slight problems falling pregnant. I would just like to see if anyone can help me though this initial denial stage and if anyone eles is going though it or went though it themselfs and can give me some pointers on what to expect next!

Tristelle