Patient Comments: Endometriosis - Treatments

Question:

Were there any effective treatments for your endometriosis? Submit Your Comment

Comment from: nikki, 25-34 Female (Patient) Published: June 02

My doctor ordered a spinal tap to check for multiple sclerosis. I had it done yesterday. I read online to drink lots of caffeine, so I drank pop before and been drinking coffee. I woke up this morning feeling good, no headaches. Just a little bit of pain where the needle was put in. But feeling great. No pain medicines.

Comment from: Scott, 25-34 Female (Patient) Published: February 09

I suffered from severe pain, had the redness all around my big toe and could feel the infection developing. I barely could have walked in my shoes. I was lucky enough to get rid of ingrown toenail with no surgery. It might be different for various stages, but I fixed mine with only Dermatico.

Comment from: joanna522, 25-34 Female (Patient) Published: October 15

I received a pacer/defibrillator implant, this is my third implant. I am on Coumadin/warfarin which was not stopped before the surgery since I have St. Jude mitral and aortic valve implants. Risk was deemed to be too great for clots to form. After surgery I am experiencing a huge hematoma over the left breast, pain, hardness and black and blue symptoms. The surgery was on 9/24 and the hematoma is still hard, painful and quite large.

Comment from: anonymous, 25-34 Female (Patient) Published: October 07

I am suffering from genital herpes. If you want to finish off the outbreaks finish coffee, black tea, chocolate and cola from your life. I have done this and my monthly outbreaks which lasted for 5 years have stopped since almost two years. Yes, if I take any of above mentioned items for a few days I get outbreaks again. I am herpes-free man till I don't take these items. Wish you all best of luck.

Comment from: Annie, 25-34 Female (Patient) Published: September 28

I have had collagenous colitis for 5 months. I am now suffering every day and taking at least 8 Imodium per day and breaking right through them. I was prescribed and was taking 3 Entocort tablets at one time, along with 2 Lomotil every 6 hours and still breaking through. I have absolutely no life because there is absolutely no warning. My doctor tells me it has nothing to do with what you eat. I now am being sent to a specialist and can't get in until November. I can't continue to live like this. I eat normally as my doctor says that this has nothing to do with what you eat. I am at my wits end.

Comment from: Bdjost, 35-44 Male (Patient) Published: June 26

Research the iodine protocol, read iodine crisis to address a healthy natural means of repairing the body. No drugs and no surgery for endometriosis, just a micro nutrient. It works!

Comment from: Ms. Hopeful, 45-54 Female (Patient) Published: September 21

I am 45 and have wanted to conceive, but have not been able to get pregnant yet. I know my husband is disappointed and this has hurt my marriage some. Anyway, I have dealt with irregular and heavy bleeding for years. I had surgery in 2010 for endometriosis, and it got better. However, now I am having tremendous pain during the first 3 days of my cycle. No medication seems to help, just puts me to sleep. I still want a child, but not sure if possible at my age. I am considering a fertility specialist. If that does not work, I believe I will have the hysterectomy because the pain is awful and I don't want that the rest of my life.

Comment from: pradeepa, 25-34 Female (Caregiver) Published: March 31

I am 29. I have a kid of 4 years. Now I am affected by pelvic pain. As I went to doctor (DGO) she suggested to me to have a second baby, and during the delivery we will clear this problem too. I wonder if this the right solution given by her and I will not get this endometriosis again.

Comment from: Laura, 25-34 Female (Patient) Published: March 19

I have had problems since I was 15, I haven't had a period in 14 years. Now I am 30, and I was diagnosed with endometriosis and polycystic ovarian syndrome. I had surgery this past December and then had the Mirena inserted in February this year. I had been in severe pain for years and nothing has helped. I cannot work, clean my house, walk my dogs or just live a normal life. I am now going to see a different doctor to get a second opinion to see if I can just have a hysterectomy because I cannot deal with this any longer. I have seen several doctors and no one seems to be concerned that I have not had a period in 14 years or that I have I have had tons of reoccurring cysts always on my right ovary and now I am getting fibroid tumors in my uterus. I also had loop electrosurgical excision procedure (LEEP) done in July of last year and have been bleeding every day for 9 months now. No doctor seems to be worried about that and I am not talking spotting. I have been bleeding like my body is trying to make up for lost time of not bleeding or something. So hopefully when I go see this new doctor next week I will finally get something done because this is driving me crazy.

Comment from: Anya070479, 35-44 Female (Patient) Published: September 05

I was diagnosed with endometriosis when I was around 22 after my ex-boyfriend found me curled up on the bathroom floor hysterically crying after emptying my bladder. I am now 35 and have had 10 scope surgeries to clean out the adhesions and scar tissue. Last surgery I had was robotic and it was the worst recovery. Sex is extremely painful therefore I've lost my sex drive. Emptying a full bladder or having a large bowel movement also causes it to flare up. My gynecologist keeps suggesting a total hysterectomy, but mentally I'm just not ready. Now I'm starting to wonder if I have interstitial cystitis because I can't believe that endometriosis is the only reason for my misery. It's very depressing. I used to be on pain pills for every period, but I've given up on taking those. Surgeries would provide relief for a few months... 18 months was the best time. It's just depressing and frustrating and scary.

Comment from: sweety, 35-44 Female (Patient) Published: November 07

I was diagnosed with endometriosis in 2010 and had it removed. Everything seemed okay until 2012, I started having severe period pain during and after period. I was also having sharp pain on my lower right abdomen, lower back and cramp on my upper right leg. I was sent to gynecologist who told me it is endometriosis. It's now been three weeks since I had it taken out but I still experience severe abdominal pains, pain in pelvis and cramps in the right leg. Sometimes it's so bad I can't sit or lie down. My general physician keeps saying I should give it 4 weeks. The problems is pain killers are not helping.

Comment from: Sweetee, 25-34 Female (Patient) Published: March 22

I am 33 years old. Three years ago, after suffering with painful periods for more than 16 years, I was diagnosed with endometriosis and fibroids. My doctor said if I wanted children, I should have them sooner rather than later--which was a worry since there wasn't anyone special in my life. This is such a painful disease and it's been so hard to diagnose. Although I have tried to live with this, I am fed up with having a hot water bottle constantly strapped to me and taking strong painkillers that don't seem to work. I've gotten to the point where I must consider surgical treatment for this condition since I can no longer take the pain. Yet I'm devastated if it prevented me from having children. I sympathize with other women who have this condition and advise anyone who is unsure to listen to her body. It's taken me so many visits to the doctor, but hopefully surgery will be the end of this painful road.

Comment from: mommaof2, 25-34 Female (Patient) Published: March 19

I am 27 and was diagnosed with endometriosis at 21. I was told not to wait past age 25 to have children. I had lap with D&C and also took one dose of Lupron along with add back therapy for treatment. I tried several forms of birth control with no results. I was even more irregular and passed lg blood clots. I had my 1st child in 2009 and my 2nd in 2011. I had a boy and girl so I decided to have my tubes tied. Since I have experienced irregular periods and pain with intercourse. Saw my OBGYN PA and she suggested ablation. Still unsure of my decision, but wanted to share my story for all the young ladies out there concerned with fertility. There is hope, I became pregnant without assistance very easily despite my condition. Good Luck to all of you in your attempts to conceive.

Comment from: ninalee51102, 25-34 Female (Patient) Published: March 01

I am 31 years old and have been dealing with endometriosis since my early 20's I have had a HSG test done and one of my tubes was blocked but still in massive pain so a year later I had a laparoscopy and was put on a shot to shut everything down so that my body could heal itself and three years later I was back to having massive pain yet again was put at the same shot again to shut everything down but it hasn't helped at all I am still in so much pain even when it's not that time of the month I will just have cramps from out of the blue that brings me to my knees and now I just don't know what to do.

Comment from: vascogal, 45-54 Female (Patient) Published: February 22

In the mid 1980's, while in my early 20's, I had severe pain on and off for months. One time, while being examined by my gynocologist, I had to grab his arm and move it away from me because of the pain. He referred me to another doctor for "pain control" therapy. At that point, I would have seen anyone in hopes that it would help, but was insulted when it turned out the other doctor was a psychiatrist who was more interested in my childhood than in my pain. The fact they thought the pain was all in my head was humiliating. I found another doctor who immediately discussed endometriosis, scheduled a laparoscopy, and low and behold found the cause. He ended up doing two laparoscopies over a three year period. I have two beautiful boys now, and no problems since. I hope that someday science will offer a non-evasive test for this. Immediate diagnosis without surgery would benefit us all.

Comment from: momoftwins, 25-34 Female (Patient) Published: January 06

I am 33 and was diagnosed with endometriosis when I was 18 and at that time I was put on birth control pills. The pills helped but when it came time for me to have kids I tried for 3 years to no avail. I had a laparoscopy and a laparotomy but neither surgery worked to help the pain or conceive. Fortunately, after one attempt of invetro I had twins! Yay! But after 5 years of not being on any birth control I am in severe pain again. I just started taking birth control pills again and I am not sure if it's the pills or what but the pain has gotten so much worse. I end up in bed for days at a time with severe cramps and I am now convinced I have fibroids as well. Oh and constipation to boot. And all the other junk that goes along with this disease that no one knows how to cure. My heart goes out to everyone suffering from this.

Comment from: katzfl, Female (Patient) Published: December 12

Be an advocate for your health! I was 38 years old when diagnosed with endometriosis, after years of dealing with pain. My doctor is awesome and it still took me saying in a nice way, that he wasn't doing his job, something was wrong with me! He listened and performed my first laparoscopy in October. I had a hysterectomy 2 months later. I'm sad to say that it's not been a year and the pain is back. This time it was my doctor who stated that he would be scheduling a laparoscopy so we can see what's going on. Only you know what is happening with your body-Listen to it! I pray for all with this disease.

Comment from: Is there hope????, 35-44 Female (Patient) Published: November 08

Was diagnosed in 2004. Had surgery in 2005. Was fine for 2 months until it started again. Now off and on the severity of it increases and decreases. I never know how it will affect me. It is so bad at times I have chest pains that take my breath away and the pain in my stomach feels like labor pains that are seconds apart. I also have swelling in my stomach that makes me look pregnant. The last episode, I got very dizzy, chest pains, and actually passed out as I made it from the bathroom to my bed. This has obviously attached itself to my stomach wall and now I have tenderness near my collar bone that was not there before.

Comment from: Nadine, 25-34 Female Published: October 11

I have always had irregular periods. I used to spot on occasion and get bad cramps, but as I got older (I'm 26) symptoms have gotten worse. Severe abdominal pain, diarrhea, nausea, fever, sharp stomach pains, and lower back pain. I bled for 30 days in March, it was pretty heavy all days. (This started 15 days after my February period.) I was spotting every month. My periods are very heavy the first couple of days as well. Sometimes I'm doubled over in pain. It has been very painful for exams. I am a Virgin still, but I think it has to do with the lesions on my uterine walls. My first gyno prescribed me an ultrasound, which I had done, but they said there was nothing there. I knew there was something wrong, so I went to my friend's gyno who diagnosed me with endometriosis. She cleaned me out because my uterine lining was extremely thick. I don't spot anymore, and once I get better insurance, I'm going to get the shot treatments for endometriosis.

Comment from: endogirl, 13-18 Female (Patient) Published: September 26

When I was about 14, I was diagnosed with endometriosis. Before the doctor realized I had it, I dealt with very long, heavy, and painful periods. I am now 18 and even 4 years later I am still dealing with the pain from it. I have had surgery, different types of birth control, and this is the second time I'm on the Lupron Depot shots. I can't have sex. When pain is bad, I curl up in a ball and cry even after pain pills. Sometimes it even hurts to stand. I am going to discuss a hysterectomy soon but it is my last resort.

Comment from: nikcho, 35-44 Female (Patient) Published: September 26

I'm a 35 year old woman. I was diagnosed with endometriosis when I was 20 years old, after going to my family doctor since I was 16 telling him about the pain, I demanded to see a specialist. After one visit with the specialist, he diagnosed me. I was in for surgery the following week. He wanted to give me a hysterectomy then but because of my age did not. He put me on the pill and my symptoms went away. A couple years later it came back, and I dealt with it until I was 30, I had the surgery again, and again they did not want to give me a hysterectomy because I had no children. This time when they put me on the pill it didn't help, now at the age of 35 and still no kids I'm a phone call away from asking for a hysterectomy. The pain is so unbearable, I cannot take it anymore. Its ruining my life and it gets worse every month. The first day of my period is the worst!! It wakes me up from sleep and last for 2 days. It's so bad that I'm constantly crying.

Comment from: Frustrated, 35-44 Female (Patient) Published: August 05

I had a hysterectomy just 7 months ago. I still have my ovaries because I am only 40. I had only 3 spots of endometriosis, two of which were removed and my doctor said the one was outside of my uterus, along the uterine wall I think. Therefore, my cramping my not go away. At first, I felt better but over the past couple of months the pain has been getting increasingly worse. I am waiting to see if the surgery was unsuccessful or if my pain is from new adhesions.

Comment from: 13-18 (Caregiver) Published: June 15

have a 14 year old daughter that started having buckling pain in January 2011 we have been to doctors, specialists, had MRI's CT scans ultra sounds, been to gastroenterology doctor had a Barium enema and a endoscopy (no colonoscopy). She had her gall bladder removed due to small gall stones which were causing pancreatitis, after the surgery she had gastritis she has been constipated since she was born nothing seemed to work for that. GI doc said all tests were normal, we took her to a gynecologist and had a pelvic exam which the doctor couldn't finish because the pain was so bad for her the doc is now sending her to get a vaginal ultrasound she is going to medicate my girl with xanax (at my request) to try and relax her so she can have it done my poor baby suffers from pain and may not be able to have children ever praying for an answer she's been in pain for 6 months praying that we get an answer and a solution too. She will be 15 in august and says she never wants to have sex because of the pain.

Comment from: Road to Recovery, 25-34 Female (Patient) Published: February 10

Do not be deterred by scary blogs. There are effective treatments for endometriosis! I am 26 and was finally diagnosed with Endometriosis a few months ago after years of treating all the painful symptoms separately. If you have any abnormal bodily functions talk with your doctor (constant back ache, severe cramps, hip/leg/pelvic pain, constipation/diarrhea, etc.). After ultrasounds and emergency surgery to remove a painful cyst I was diagnosed with severe Endometriosis (determined with laparoscopic pictures). I am on the depot-lupren shot for 6 months and have already noticed decreased pelvic pain in the last 3-4 weeks (and thankfully no period since, early menopause sucks but there's less pain so it's worth it). After years of battling pain there is a light at the end of the tunnel. I'm nervous I might not be able to have kids but they have encouraged us to try before any further surgeries. While this has been the most painful experience of my life I have had so much support from family and friends. Online information has helped me understand this issue as well. This experience has encouraged my friends to talk with their doctors about any possible concerns so please don't hesitate to get tested and receive help, don't "wait for it to go away on its own."

Comment from: baby's moma, 25-34 Female (Caregiver) Published: January 24

To let all of you out there with this horrible disease I know, get it seen about now. My daughter, who just turned 28 is right now in the hospital. She had emergency surgery on Monday night, the 17th because endometriosis implanted on her intestines and it caused a blockage. They had to remove a part of her intestines. My daughter almost died. She didn't even know she had this until the reports can back on the pencil eraser sized implant they removed off her intestines. Her symptoms were pain in back, stomach, migraine headaches, painful periods and vomiting, nauseated after eating or sometimes not even eating. It got to the point she could not keep anything down, solids or liquids. The doctor told us this is life-threatening. So please if you have a question as to whether you have this or not, get to a doctor. If we had waited 24 hours my daughter would not have made it.

Comment from: maria, 45-54 Female (Patient) Published: August 16

Hello, my name is maria , from phillippines, anyway I've been having this problem since i turn 48 year old, heavy bleeding of my period for a month, then i went to the doctor and consul my problem regarding this i have made a ultrasound to find out what went wrong till they told me that i have this endotrium /d/c case i was so afraid and worry, after finding out my case they suggested to take a injection to hold on or stop my period for 3 months but then spotting was still continue until now this is not spotting anymore it continue and still heavy bleeding, I wanted to have the operation of getting out my ovary for stopping it I don't know I am confuse of what is happening to me.

Comment from: jjsthebest, 45-54 Female (Patient) Published: August 16

I just got diagnosed with endometriosis at age 44. I had my first baby at age 35. We tried for another baby when I was 37 and I suffered a near fatal ectopic pregnancy (tubal pregnancy) and I lost the tube on my right side as it ruptured. We did have our second and last baby when I had just turned 40. It took us longer to get pregnant that time. Of course, I was almost 40 and only had one tube. After the second baby, I had my other tube tied. Was having a lot of bleeding during period, so my doctor put in an IUD. It helped a lot with bleeding. Then, started in Sept. 2012 with severe pain on right side. Had large cyst (8cm) on right ovary, found via ultrasound. Took birth control pills and cyst shrunk but did go away and pain continued. Surgery December 2012 to drain cyst. Felt better briefly then pain came back. Diagnosed with another cyst right ovary early 2013. Decided to remove right ovary July 2013. Biopsy of ovary showed endometriosis. Doctor said that explained why I had the tubal pregnancy right side years before. Unfortunately I am still having pain on right side. Hoping still recovering from surgery, but doctor says may be endometriosis elsewhere in muscles, etc. and I may continue to have pain. Could take hormones to help. I would rather not, just taking it day by day at this point and hoping won't have to take hormones. Tired of constant pain. Also concerned about my two little girls eventually "inheriting" endometriosis. But, very thankful it did not affect my fertility and I was able to have 2 children.

Comment from: patienceturner, 25-34 Female (Patient) Published: June 07

I have had endo for about 6 years now I am 34. I am about to go have another laparoscopy as a last result. I have tried every birth control pill except the depo lupron shot to no avail. The depo shot would put me into a menopausal state, and after much research, have decided that I would rather undergo surgery again than go through 6 months of hell with no guarantee of pain relief. The endo has reached my bladder and I am in a constant state of having a UTI and I cannot handle it anymore. If this surgery does not work, I will opt for the hysterectomy and deal with the fact that children are not in the cards for me.

Comment from: Gazzelle 431, 55-64 Female (Patient) Published: April 15

I hate to be the bearer of bad news, but endometriosis is very serious. After having a hysterectomy in 1997 at the age of 46, everything was taken out except one ovary. My gynecologist's feeling was that I was in menopause so it wasn't a big deal. After 10 years and nearly two death experiences later, I realized something was terribly wrong. No doctor would operate. It was only after asking for elective surgery to remove my remaining ovary that they found how badly endometriosis had destroyed my pelvis area. I read an article from a medical center study that said if anything is left after a hysterectomy (like ovaries), cells can take on a life of their own and begin to grow throughout your pelvic area. In 2007, I needed surgery for my appendix. My bladder and colon were fused together and “fell” into my vaginal area. I had a hole in my peritoneum. An infection flared up into my gastric area. I never had anything wrong with me except for endometriosis, which caused me my worse pain and almost my life twice. Now at 62, I hope it is all behind me. Women need to push for more research on this, along with interventions.

Comment from: Sambelle, 25-34 Female (Patient) Published: April 08

I will be having my second surgery today for my endometriosis. I had the first three years ago. I've also been on the Lupron injection for six months following my first surgery (menopause is not fun). I am hoping this time with help I'll be able to have children. I am 34 years old. I have a twin sister with endometriosis also and she was told by our doctor that she would not have kids again. But she gave birth to my nephew three months ago. This gives me hope.

Comment from: Betsy, Female Published: February 06

I am now in my 60's . I want to share my story so all that reads these stories is not so discouraged about fertility. I had wide spread endometriosis is my early 20's. I had all the endometriosis removed that they found and also had several large cysts removed from my ovaries and part of the ovaries removed. I got married 2 years later and had our first baby 4 years after. I was always afraid I could not have children, we now have 3. Do not dwell on this fear, have hope.

Comment from: Kay, 19-24 Female (Caregiver) Published: January 10

My wife has been sick over a year now with very similar symptoms. Initially the doctors said she couldn't have it because she was on birth control at the time. The pain all started a month after she had a laperoscopy on an ovarian cyst.

Comment from: Dora, 35-44 Female (Patient) Published: December 04

I am 36 and just recently found out this is what has been causing my pain. I had a son when I was 24 and another when I was 29. It took years of trying though before I became pregnant. At the time I didn't think to see if there was a reason why. They went in October to remove mine and I started having the pain again 6 weeks later. So since I didn't plan on having anymore kids in January I am having a hysterectomy. Since it came back so fast the doctor thinks this is my best option.

Comment from: corey0524, 25-34 Female (Patient) Published: October 31

I was diagnosed with endometriosis when I was 15. I am now 30 and have had eight surgeries. I have been on three sets of Lupron injections, and taken countless pills and nothing has worked. I was constantly in pain. My last surgery spreads to my intestines, colon, cervix. Through a miracle I was able to have a baby, so I thought everything would get better. Nope! I was back in the hospital for another surgery a year after my son. I am still in constant pain and I guess I just learn to deal with it. I just wish the doctor would give me a hysterectomy already. I don't know what they are waiting for!

Comment from: KikiLolo, 19-24 Female (Patient) Published: September 09

I am 22 years old and I've just been diagnosed with Endometriosis today. For the past 3 years, I have been suffering with the pain and have been bleeding for 3 - 6 months at a time for the whole 3 years. I've been through multiple doctors and they've just given me pain medications (that really didn't help) and birth control, which they multiplied by 5. So I was taking 5 birth control pills a day and lowered the dose until I started bleeding again, in which I was told to up the dosage. Then I came to a new doctor who finially diagnosed me and so far, she's put the Merina Y Shaped thing in my cervix to stop the bleeding and it's finally slowing down...I'm able to go out of my house after being trapped in my house for almost 4 months of pain and bleeding. Next step is to clear out my insides, D&C? I think is the term and then a hysterectomy. They're trying everything in their power to avoid that due to me being so young, but I have 3 kids and have been told multiple times I could not get pregnant...Just thought I'd share some hope that having kids is still possible. I did have to get induced with my 3rd son who is 9 months old now because I started with the pain/bleeding and have been bleeding/in pain since then!

Comment from: stephy, 25-34 Female (Caregiver) Published: June 09

I have been suffering from endometriosis for the past 7 years after my first son was born. Sometimes the pain is excruciating. Even having sex with my husband is sometimes too much. The doctor suggested I start off on the Pill. However it gave me migraines and made me fat. I have learned to live with it. Sometimes it's so bad I have to go to the hospital. Other times I just bear it. Pain killers help at times.

Comment from: Shrop1, 45-54 Female (Patient) Published: May 19

I have had endometriosis for years. I am 48, and within the last three months, my abdominal pain has been very bothersome. I have had painful periods since I was a teenager and took fertility drugs to get pregnant. (I had two kids.) I had a colonoscopy performed recently, and they didn't find anything. I had some adhesions removed about six years ago, and that really didn't help. I have tried birth control pills and Depo and got nothing out of it.

Comment from: lissa, Female (Patient) Published: April 25

I have endometriosis and the pain is unbearable! It hurts to walk sometimes. Most of my cycle, I'm usually curled up in the bed or on the couch. I have a lot of swelling and tenderness in the lower part of my abdomen and close to the vaginal area. I had the lap done almost two years ago and I'm not sure if I should go have another one. My doctor has put me on so many different birth control pills, but it seems as if I always have some sort of side effect to them. I am 27 years old. I do not have children. I am a little nervous about waiting too much longer to start a family. My gynecologist seems as if he knows what he is talking about, but to him, he acts as if it's not a big deal. I'm thinking of getting a second opinion. All I know is the pain in my legs, back, and stomach is driving me insane, and it makes me very irritable. I get terrible migraines every month, and it is definitely painful during intercourse and pelvic exams.

Comment from: Jodie, 25-34 Female (Patient) Published: April 06

I am 30 with MS and Graves Disease. I also had a stroke at the age of two years. Approximately 6 months ago, I started to have extremely heavy periods and debilitating abdominal and back pain. After numerous different doctors and two ultra sounds, two cysts were discovered on my left ovary. As I was in extreme pain, a laparoscopy was preformed and it was discovered that I have endometriosis. Even after the surgery, I am still in extreme pain.

Comment from: 35-44 Female (Patient) Published: April 04

I am 41 years old and a mother of three. The difference of my last son is 8.5 years from my second-born. One year after the birth of my youngest son, I got my right ovary removed, as there was a cyst as big as the size of an orange on it. My doctor tried to drain it first though an ultrasound-guided needle, which did not work because the liquid in it was very thick. On the biopsy we found out that it was an endometriosis cyst and not cancerous. Now, after five years, I got myself an ultrasound that showed an endometriosis cyst 8.1 by 7.5 by 7.1 centimeters. My doctor suggested I take Danazol (200 mg) three times a day. I have heard about the side effects, which are irreversible.

Comment from: kt88, 19-24 Female (Patient) Published: December 28

I am 22 years old and got diagnosed with endometriosis three years ago. I also had a PID (pelvic inflammatory disease) at the same time. I've always had unbearable painful cramps, and very heavy periods. I went in for outpatient surgery three years ago and had a laparoscopy done to clear out some of my infection. The endometriosis is blocking my right fallopian tube, making it hard to have kids one day. I am not on any birth control and am sexually active. I have never gotten pregnant, and am still having very painful periods every month. My doctor told me it was going to be difficult for me to have kids one day because of my conditions. I hope surgery will allow me to conceive.

Comment from: wendy, 55-64 Female (Patient) Published: May 18

I am somewhat cynical of the laser/lap procedure. I would have had 15 - 20 of them in my years prior to menopause. The improvement from pain would last 6 weeks or so and then back to how it was. I also had microsurgery on my tubes etc - very painful after and it did nothing to make me fertile! Then there's the problem of adhesions from the incisions for the laparoscopy which can cause problems later. I advise caution with surgery of any kind. I am happy to speak further of my experiences. Menopause is a joy for endometriosis sufferers as myself!

Comment from: kiki12, 35-44 Female (Patient) Published: May 18

I am 38 years old, I was diagnosed with endometriosis at the age of 21, and told I would never have children. Three laparoscopies and one laporotomy later my o.b. at the time said he didn't know what else to do for me. I researched and found an endometriosis center that performed my surgery, after seven years of infertility and the physical and psychological pain associated with infertility and endometriosis, I became pregnant. I did have three miscarriages before we figured out I needed progesterone. I now have 4 beautiful daughters.

Comment from: Laciep19, 19-24 Female (Patient) Published: May 11

I am 19 years old, I just had my surgery may 10th of 2011, I found out I have endometriosis. The doctor told me that once I have as many kids as I want, that he wants to take my cervix and uterus out. Finding out something like this at 19 is a huge shock.

Comment from: angiem, 45-54 Female Published: April 28

I had excruciating pain from the time I started my menstruation. I was always sick and never well. No one could diagnose a cause. I did have one child at age 20. The pain the bleeding. The infections and the sickness were so severe and debilitating and I vomited all the time because of it. I was diagnosed about age 23 with endometriosis. Laparoscopy was done to do laser surgery. However, it was so severe he closed me up and put me on danocrine. Which was so expensive I couldn't afford it after I lost my insurance. I couldn't walk, had bladder, kidney, urinary tract infections constantly. Then liver damage due to pain pills. I was tested for Lupus due to all the illnesses I had. But it was inactive. Eleven years later I had another child and then went on depo provera. What a miracle. No more infections. No more pain. I am never sick and rarely even a cold. I just heard that because the body is always fighting against the implanted tissue endometriosis could cause an auto immune disease. I have been pain free and sickness free for almost thirteen years.

Comment from: jmarisk, 25-34 Female (Patient) Published: April 26

I have always had severe menstrual cramps. I can remember passing out from the pain in high school, but still my doctors have never taken my plead for relief seriously. I am 26 and hoping to start a family soon. But I am terrified that endometriosis will cause me to be infertile. I have started working out and have noticed a change in my monthly pattern. My period is more regular; however, I experience severe constipations a week before and a week after my period. About 3-5 before my period starts I feel like I'm having a UTI and then get severe lower back pain. I've gone to the ER for the pain, thinking I had a kidney infection but no infection was detected and nothing came up on the CT scan. Doctors are looking at me like I'm a crying wolf! Before I started working out, I would feel several abdominal cramps for 2 weeks leading up to my period, plus all that other stuff I just described. Now, I only have 1 or 2 days of pain at the beginning of my period but don't expect me to be much good to anybody on those days as I'm usually in the fetal position somewhere. Fatigue is terrible. I have a history of blood clots so I am not a good canidate for hormone therapy. Surgery would be risky too. But I want to have a baby! There has got to be a way...

Comment from: yorkie, 35-44 Female (Patient) Published: January 24

I am 41 and have had endometriosis for around 5 years, however I had the same pain around 20 years ago and did not realize it was endometriosis. The last 5 years it has gotten worse, I went in and had surgery and my doctor removed cysts from my bowels and uterus and put me on the depo shot all of the pain was gone, however I have quit the shot since then as I did not like side effects, but now I only have the pain right before period.

Comment from: Sandhow, 25-34 Female (Patient) Published: January 24

I was diagnosed with endometriosis about 3 weeks ago. It was discovered during surgery for the removal of uterine fibroids and a dermoid cyst. My periods have always been heavy, lasting about a week and very, very painful. Sometimes the pain in my lower right abdomen would be so severe I can't even stand or walk. I thought the surgery would prevent the pain but now I'm days away from my cycle and I fear it was the endometriosis all along. My doctor has prescribed lupron injections to help with the disease but the side effects scare me so bad. I'm not sure what I will do at this point.

Comment from: marethnah, 19-24 Female Published: January 10

I am 21 years old I have severe cramping during my period, and a very heavy flow. Recently my period started lasting around 3 weeks so I went to the doctor and she put me on the pill. My period got heavier and I have noticed tissue in it. The first week on the pill I passed a three inch clot. Since then the pain has gotten worse and now I have severe back pains and nausea. I am going to the doctor today about it, scared it may be endometriosis.

Comment from: mdb2502, 35-44 Female (Patient) Published: January 05

I was 25 when I got diagnosed with endometriosis. I had always had very heavy and painful periods and I experienced trouble getting pregnant. They found the endometriosis lesions when my son was delivered by c-section. Not long after delivery I started Lupron injections which put me into menopause. I was in menopause for 5 years even though I did not have a period I still experienced severe cramping and the Lupron caused me to be very sick. I wanted to have more children but the endometriosis was to severe even with the Lupron therapy and eventually I ended up having a total hysterectomy. I still experience pain because I have the endometrial lesions on my intestines, bladder, colon and kidneys.

Comment from: bringit on, 25-34 Female (Caregiver) Published: January 03

I had an ovarian cyst removed last year and this is when they told me that I had endometriosis so now I am working with my doctor to have it removed if possible I have had a lot of pain with my periods. I have 1 child now but it would be nice to give him a sister or brother.

Comment from: pinky, 25-34 Female (Patient) Published: September 21

I am 25 years old and I was diagnosed before with a Bartholin cyst in my labia minora but they also considered it as endometriosis. The right part of my vagina was enlarged. I think it's filled with fluid inside as I touch it. It is painful when having menstruation and enlarges when having contact with my boyfriend.

Comment from: olka, 35-44 Female (Patient) Published: January 10

Natural progesterone helps a lot with the pain also vitamin B and E and lugol dr.

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