A message of encouragement from Jessie – who is a Registered Nurse and also knows what it is like trying to live with endometriosis.
I was just diagnosed with Endometriosis a couple days ago. At first, I was shocked and confused to what my doctor was telling. I have only had a month of pain in my left ovary. After, reading all your stories I'm so upset with the way that modern medicine is going. These doctors hold all the power.
I'm writing this to encourage all you women who may be suffering from this disease to control of your health. For example: Do NOT be scared to get a second opinion (30% of diagnosis will change after a second opinion), think about holistic care (our bodies are created to heal themselves), and do not be scared to ask, ask, ask! I have been seeking out many different avenues since this diagnosis happened. I have received interesting news about the holistic accept being that estrogen is going crazy in our bodies that is what is causing the endometriosis and flaxseed has estrogen receptors in it that helps to bind the estrogen so it minimizes the growth.
I personally don't want to put any more hormones or drugs in my system. I'm going to try this approach. I'm not taking any birth control and my husband and I are just going to take it one day at a time and see what God brings. Anyways, please look into alternative medicines they could be your answer. Any surgery can be dangerous, think about that before you go. I'm an RN and have had many patients that have had "accidents" under diagnostic testing. Good luck and God bless to all of you.
After having 2 children, I decided to get sterilised in 1998,I was not happy taking the pill and didn't want to be on it long term, I never had any problems with my periods until then. After being sterilised my periods got heavier, lasted about 7 days (3 days max before sterilization). I would have terrible cramp (the only way I can describe it is like contractions), my stomach would swell up, I had symptoms in my back & rectum, with every period the symptoms got worse.
My doctor prescribed several types of medication to treat the problems but to no avail. As the years passed the symptoms got worse and worse, I would vomit, scream, and cry with the agony. I had diarrhoea or constipation all the time. I was so tired and washed out. My doctor sent me for a scan for diagnosis, nothing!!
One day I went to him when my stomach was so badly swollen (I looked 8 months pregnant) he diagnosed me with IBS, more medication, that didn’t work!!! After 5 years of suffering my doctor finally decided to send me to a gynaecologist as he had tried everything and had no idea what was wrong with me. Knowing what I know now I should have changed my doctors years ago, (one time I went to the doctors I was asked, what do you think is wrong with you?).
I had to wait 10 months before my appointment, where they decided I had to have a laparoscopy. Another year on the waiting list for that, my pain was totally unbearable by this time, I had been at A&E several time unable to cope with pain (where I was given morphine injections).
Eventually in dec 2005 I had my laparoscopy, when the surgeon came to see me he said, I was a bit of a mess, I had endometriosis on both ovaries, bowel, rectum and my appendix and a large cyst on my left ovary and it would all have to be removed. I would have to take the pill continuously for treatment to stop my period until the operation. At last I knew what was wrong with me and they were going to take it away, it was such a relief.
Another year, dec 06 I went in for surgery, the endometriosis and appendix was successfully removed and I felt really happy thinking that’s it no more pain!!! My periods are not as heavy and they only last 3 days, like they used to, BUT the pain, swelling diarrhoea/constipation are all still there. I feel I cant take any more. I went to see my gynaecologist last week and he said I must try hormone injections (prostat SR) for 3 month. If they don’t work I have to have a hysterectomy, I was really upset on leaving and don’t know whether to go back for the other 2 injections, or to try alternative therapy..................
Keep working to help yourself! I would like to write more in the near future, but want to get this information out as soon as possible to whomever it could help. I want to add acupuncture to 'the mix.' I first went 5 years ago, it didn't seem to help much. I now go back to the same place, but different practitioner. MUCH better!
Here are some things that have helped me, but not yet 'cured.' I sent this e-mail to some names on the boards here. 'HI, I apologize for lumping all the e-mails together, but I was so impressed with the endo-resolved site, and wanted to pass some info on, I don't know if I missed it on the site, but something that has helped me is natural progesterone.
drerika.com is a good place to start, and also on google.com, search for 'bellevue pharmacy' - the pharmacist Pete there has helped me - he recommends things, and your doctor can prescribe natural, compounded progesterone (bio-identical) Also, I go to an excellent natural internist who has helped me with some herbal things. I will get the names for you tomorrow. They are available without a prescription.
It would be best to get a doctor who could help you, but if you can't, these are still very good. Yes, I still have pain and found this because I am thinking about surgery - but I went from using narcotic pain killers all the days of my period to now 'just' using them the first day, and motrin the other days. I want to change my diet, to see if it helps. Oh, I also want to say I use the following herbs from Artemis Herbs, in the UK (I am in the US): damiana leaf, white peony and licorice (liquorice) - www.artemisherbs.co.uk they DO seem to help (but nothing ever 'solves') oh, and menastil is very good, at menastil.com oh! One more thing - those heat patches from thermacare really do help (in the drugstore)
Thanks for all those tips Andie – and keep up the good work, Carolyn
Hi, I was diagnosed with endometriosis in 01, I was 24 at the time. I experience a lot of bloating and discomfort. I have symptoms of feeling tired all the time and very irritable. I have two kids (my miracle babies). Sometimes I feel so irritated I lash out at them. I try to be patient but sometimes I feel so out of myself. I just want to be a normal person with a normal life. I went back to my doctor and was schedule for my second laparoscopy. I feel so overwhelmed, I'm tired of being tired and sad.
I am 22 years old and I was diagnosed with having Endometriosis in April 2004. I started developing extremely sharp debilitating pains about 4 years prior to finding out about Endometriosis. It was making it really hard for me to do my everyday activities. It was getting worse as time went by.
I have a three year old daughter and is was getting to the point where my pain was getting worse and all I wanted to do was stay in bed and not move, but with having a child I wasn't able to do that, so I made an appointment with my Obgyn . We at that time didn't know what was exactly causing my pain, so she had did many test and still couldn't find what was causing it.
So finally she had discussed a procedure that was a Laparoscopy. When the procedure was complete, she told me that I had a very extreme case of Endometriosis. She tried to remove as much as she could, but she said that there was nothing that would get rid of it all, it would come back and she would have to go in again and remove what she could.
At that time she discussed on giving me treatment of Lupron Depot injection for a total of six months. This put my body is a menopausal state so I wouldn't ovulate. It was supposed to help with the growth of the endometriosis. To me all it did was make me feel worse. I had really bad hot flashes and stayed nauseated
. Once I had finished the Lupron we then tried different birth controls for treatment, and nothing worked. She then put me on the Ortho Evra patch, which I wasn't able to take off on the fourth week. I wore it continuously.
My doctor has now recommended me to go ahead and have another child so she can take my uterus to try to help with pain management. So if you don’t know for sure, if you have endometriosis contact your Obgyn as soon as possible. Waiting on getting checked can be very painful in the long run. I waited for 5 years before I had something done about it. I now am unable to work because the of the extent of the symptoms.
So do as much research as you can. It may save you from not missing out on the joy of life. I have spent so much money out of pocket and still have several medical bills to pay because of the Endometriosis. I hope by telling you my story has been helpful and has given you just a little push in the right direction. I wish you best of luck, and I hope you will not have the burden of having this disease. Thank you for reading my story.
A typical story from Carrie, who has been badly treated by the medical profession, and says she has got most of her questions about endometriosis answered by reading books or the internet!! I am 29, and I have always had extremely painful periods since they began at age twelve. I was always told it was normal and that I was being a big baby. My periods usually made me sick and I missed lots of school due to cramps, nausea, and fatigue. As I got older they progressively became worse. I saw the GYN several times about it. They tried pills but I couldn't take them because they made me too sick.
The doctor offered an anti-depressant and I said no way. SO then they put me on Depo-provera as treatment for my symptoms. At first I had no problems. It was great, I had no pain, no periods, no bloating. I loved my life! Eventually my libido trickled down to almost nothing, it nearly destroyed my marriage, and I ended up on anti-depressants and in counselling. I became so depressed that I never wanted to eat and couldn't get out of bed because I was too tired to get ready for the day.
The doctors all thought my problems were "stress-related." On top of that I gained twenty pounds! So, my counsellor and I agreed that I should stop taking the Depo. That was five years ago. The first two years without Depo were pretty good. I had normal periods and minimal cramps. About two and a half years ago, I started to get a sharp pain in my abdomen. It just wouldn't go away.
I have been tested and diagnosed for all sorts of things from acid-reflux (?) to UTIs to kidney stones to strained muscles. All of which turned out to be misdiagnoses. Over the past two and a half years the pain symptoms would come and go but it always seemed to be getting worse. It would start to last longer and the level of pain would increase to intolerable. I've been in and out of the ER several times and it seems that all the doctors ever do is give me stronger pain meds, which I really don't want.
In December I went in to the Doctor again and this time I went in with a list of all my symptoms and a pain diary. He told me he thought I might have endometriosis and gave me a referral to the OG/GYN. The GYN did a pelvic exam and said okay your options are laparoscopy or Lupron. I told him I wasn't going to put my body into an induced menopause without knowing that I had endometriosis.
So, in March of this year I had a Laparoscopy and he found an adhesion that attached my intestine to my pelvic wall, but said he didn't find any endometriosis and left it at that. So, I thought either I didn't have it or I was going to be better now.
My first period after the surgery the pain came back. It's been extremely difficult because I'm a teacher. I'll be in the middle of a lesson and pain will shoot across my abdomen, up my rectum, all around my hip and down my leg. I've had to leave my job because it's just too much.
I ended up in the ER last week because I nearly passed out from the pain while I was driving. All they did was give me narcotics. I went back to the GYN this last week and they started me on birth control to treat it, but in the form of a ring (so that I don't get sick). I'm hoping that this will improve things a little. They have me on it so that I have a period only once every three months.
I am trying to be optimistic but there are so many things that I want to do in life and endometriosis has hindering most of them. I just want to function normally again. If anyone has suggestions, I am open to them. I am starting to look into alternative treatments like acupuncture and diet. I'm really irritated with the doctors I have here because they won't diagnose me, they won't tell me all of the treatment options, but yet they keep trying to treat me for it.
I have found most of my answers about Endometriosis online and in books. I wish all of you the best of luck with finding the treatments that work for you :)
I've always had bad periods. My mother used to tell me stories of her spending nights in the bathtub because of her menstrual pain. So I never thought anything of it growing up. I am nearly 19 and have felt like I've had my period for 4 months. It's been getting progressively worse.
My live-in boyfriend finds it really hard to deal with, not to mention me. I have no contact with my mother or any female I can talk to. I recently thought I was pregnant or had a serious problem because of the possibility of endometriosis. Well, I waited and finally got my period, so I decided to get to the doctor ASAP.
Luckily I found a doctor who is Amazing. She knows how scared I am. I have a pelvic ultrasound scheduled for the end of the month, and the way that I hear it, they can't really diagnose endometriosis without a laparoscopy. I've never had a sprained anything so it seems pretty major to me. I'm pretty nervous.
I've always had a feeling I'd never be able to have kids. I don't want them right now, but I really do someday. I keep seeing the painting by Frida, of her and the baby separated only by the cord. I have read a lot of stories and am scared this minor surgery might make things worse, but I don't know what to believe. I am on the pill right now and it never helped my pain at all.
Should I talk to my doctor about alternatives like diet, exercise, other prescriptions before this happens.
I have read several stories, and I decided that mine might give someone who is trying to get pregnant a little hope. I was 21 when I got diagnosed with endometriosis (I am now 32). My periods were irregular, and the pain was so bad that I would sometimes take Nyquil to just knock myself out.
I started gaining weight for no reason, and I went like two months without a period. My husband and I were sure I was pregnant. I took at a test, but it was negative. I scheduled an appointment with ob/gyn only to be told that I wasn't pregnant, and the irregular periods were probably from weight gain... here is your bill, have a nice day.
I decided to see another doctor to get help with getting pregnant. Just for precautions he did an ultrasound. Guess what? I was told I had a rather large cyst. No problem I was told. I was scheduled for laparoscopy surgery, but in recovery I found out I had a laparotomy. Believe me there is a difference. I found out I had severe endometriosis, and the doctor had taken half of one ovary and a little more than half of the other. I was then put on Lupron, and right in the middle of my treatment.. I get a letter that my doctor is not on my insurance plan any longer.
I got turned over to some money hungry doctor in Houston. Before even looking at my chart, she tells my husband and I that the only way I could get pregnant was in-vitro. She also threw in that it would be $10,000 with no guarantee. IT WOULD NEED TO BE GIVEN UPFRONT! Again, I was 21 years old, so the chances of me having that much money were a joke.
I cried it felt like for days, and I even told my husband I would understand if he wanted a divorce. Then one day, I met this doctor that to this day I just know she was a gift from God for me. She brought with her understanding, compassion, and intelligence. She too was trying to help me get pregnant, and actually did an 8 hour surgery on me to get every piece of endometriosis she could find.
About a couple of months later, she did surgery on me one more time to make sure everything was doing well. She referred me to a infertility doctor to help get me pregnant quickly. But before she turned me over, she told me not to give up. She said that she knew we were meant to be parents.
This was in June of 2000. After going through in-vitro, I found out the Monday after Thanksgiving 2000, I WAS PREGNANT. I made it through scar tissue on my ovaries and cysts the size of grapefruits to find out finally I was going to be a mother.
After my beautiful baby boy was born, I was told if I wanted another child I would need to be pregnant by my son's first birthday. If this didn't happen I would need to do in-vitro again. My husband and I were so excited about just having my son. We didn't worry about having any more children.
My son turned 15 months old, and I found out I was pregnant again. A little surprise from God. I have two children now (a boy & a girl).My son is now 4 and my daughter is 2. My battle with endometriosis isn't over, I have been fighting a cyst on my left side for about 9 months. I just found out it is getting bigger. So my story isn't to tell you that I am cured from Endometriosis, but only to tell you not to give up on your dream of motherhood.
I struggled for about 8 years with endometriosis before I finally was able to get pregnant. It was a hard road with multiple surgeries, tears, pain and stress. My message is this "if you want a baby, DON'T YOU DARE GIVE UP!". I deserved a chance to be a mother, and you do too! If I can help anyone with the struggles of infertility because of endometriosis, please email me. I can be a shoulder to cry on. God Bless.
Thanks for that positive story April , Carolyn
Hello, I never thought in my life that my endometriosis would come down to this, I guess I am now left seeking advice from others going through the same thing. I started my period at the age of 12. I always had bad menstrual cramps. I was put on the pill at the age of 15 and stayed on it until I was 25. The reason I stopped taking the pill is because I knew it took a while to get out of your system and I wanted to get pregnant.
So many people warned me not to wait, and trust me, I'm so sorry I did. I am 27 and will be 28 at the end of the year. I have had laparoscopy and cryotherapy and have had my tubes checked, my spouse even had his sperm checked.
This is where I am now... My doctor just advised yesterday that IVF would be the only way I would get pregnant. He said that we could try taking a medication that could stop menstruation all together to try and give the endometriosis time to heal - the pill is called "Cyclomen". The side effects to taking this med are hot flashes, mood swings, acne, weight gain and a decrease in breast size. There are many other rare side effects mentioned as well.
My wedding is set for July 1st and I know that I can no longer live with the pain of having a period, more now that the laparoscopy did not improve the pain at all. I have been taking way too much time off work during my period, but what can you do if you can't even begin to function? I'm left now with the choice, hysterectomy or new medication?
My name is Jenny and I was told two years ago that I have Adenomyosis and than this year my new doctor told me that I have Endometriosis! I have suffered from these diseases from 1996 and even now! Even without health insurance! The doctors in my past have put me on birth control for these problems and one even told me that I had a cyst behind my right ovary! well that's gone!
I have gone through five doctors and the last two told me two different diseases! The recent one told me that from the biopsy and ultra sound and the mri that I do have endometriosis! and she told me that! She wanted me to go on this hormone pill to see if it would work as treatment! But I found out that it did not work! But made my blood pressure go too high and made me depressed as well! So I told her no more pills!
Then she told me my other choices that I could do! 1. is to have a laparoscopy done! or 2. have a endometrial ablation done! or 3. have a hysterectomy done! These were the options that she gave me! But then last night my husband suggested that I go on a endometriosis diet! I told him that that would mean no red meats or chicken or any diary products: But fish and high in fiber foods and fruit as well! And no caffeine! He wants me to do this for six months!
I sure hope that it works because I am really tired of being in pain! Oh I forgot my doctor told me that this could go away by menopause! I just know that I am really tired of suffering! And that I really wish that I have health insurance for this illness:
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