Endometriosis - Experiences?

[cbg1027]

My mother died a couple of years ago at age 60 of ovarian cancer. She was not diagnosed until the very late stages. For years before her diagnosis, she minor GI issues, pain in her abdomen, and back pain. Since the symptoms are so common as minor ailments, ovarian cancer is hard to detect.

I'm 28 and have been having those same worsening symptoms over the past year and half or so. I finally put two and two together and started freaking out that it could be ovarian cancer. I saw my OB-GYN a few days ago and told her of my fears. After asking me some screening questions and doing an exam, she is convinced that I have endometriosis and NOT cancer.

So the good news is, no cancer.

But the probable endometriosis is no fun either, although it's not life threatening.

I have really horrible, painful periods, and I have been having a lot of pain in my abdomen all month long. The doctor said they can diagnose endometriosis for sure with a laproscopy and then remove any cysts they find at the same time. But removing the cysts is no guarantee of alleviation of the symptoms, or that the cysts won't come back.

So I asked her about a hysterectomy and oopherectomy (removal of the ovaries). She of course laughed me off with, "But you're 28, you want the option of having children". But I pressed on and she did say that removing the reproductive organs does cure the endometriosis, but that it would send me in to early menopause. I figure removing the ovaries while they're in there would be a good idea given my family history.

The doctor also said having children can alleviate endometriosis. But, I've known since I was 21 that don't want kids. Neither does my fiance and he's 38. That's one of the things we've agreed on before entering in to a marriage.

So I'm just looking to see if any other DIS ladies have endometriosis and what their experience has been with it. How do you manage the pain? Has anyone had a hysterectomy before they were of a menopausal age? What was that like?

 

[SydSim]

I had PCOS, and had abdominal pain on one side for some time (maybe around six months). My endocrinologist sent me for abdominal ultrasounds to monitor the ovarian cysts and an actual tumor was found, which turned out to be malignant.

I had a complete hysterectomy, with removal of my ovaries, when I was 37. I had already had my only child and Dh and I decided not to have any more already.

Being a nurse, I knew how deadly ovarian cancer was (and how it can go undetected for so long until its too late), so when they were removing the tumor, I said take everything else with it.

I am grateful everyday to have my life! That being said, menopause has been a struggle. I was also a dancer who struggled with my weight because of PCOS, and now it's really out of control. I have that typical abdominal belly bulge that you see in tv commercials. I was on hormones for years and stopped them last year, so sleeping is now a challenge. Hot flashes are out of control too.

Now don't get me wrong, I am extremely grateful to be alive, but menopause hasn't been that great. Is there anyway you can just get ur ovaries removed? And can u get a more thorough assessment for ur complaints (did they do any kind of exam, or just diagnose you from ur symptoms?)

Whatever you choose, good luck and blessings.

 

[The Mystery Machine]

My mother died a couple of years ago at age 60 of ovarian cancer. She was not diagnosed until the very late stages. For years before her diagnosis, she minor GI issues, pain in her abdomen, and back pain. Since the symptoms are so common as minor ailments, ovarian cancer is hard to detect.

I'm 28 and have been having those same worsening symptoms over the past year and half or so. I finally put two and two together and started freaking out that it could be ovarian cancer. I saw my OB-GYN a few days ago and told her of my fears. After asking me some screening questions and doing an exam, she is convinced that I have endometriosis and NOT cancer.

So the good news is, no cancer.

But the probable endometriosis is no fun either, although it's not life threatening.

I have really horrible, painful periods, and I have been having a lot of pain in my abdomen all month long. The doctor said they can diagnose endometriosis for sure with a laproscopy and then remove any cysts they find at the same time. But removing the cysts is no guarantee of alleviation of the symptoms, or that the cysts won't come back.

So I asked her about a hysterectomy and oopherectomy (removal of the ovaries). She of course laughed me off with, "But you're 28, you want the option of having children". But I pressed on and she did say that removing the reproductive organs does cure the endometriosis, but that it would send me in to early menopause. I figure removing the ovaries while they're in there would be a good idea given my family history.

The doctor also said having children can alleviate endometriosis. But, I've known since I was 21 that don't want kids. Neither does my fiance and he's 38. That's one of the things we've agreed on before entering in to a marriage.

So I'm just looking to see if any other DIS ladies have endometriosis and what their experience has been with it. How do you manage the pain? Has anyone had a hysterectomy before they were of a menopausal age? What was that like?

As a person going through the beginnings of reg. menopause, it is no picnic as PP has stated.

It WILL affect your life overall and your sex life.

That being said, I do not blame you for considering this procedure.

 

[Darcy03231]

I have two very good friends that had endometriosis. Both suffered with it for years and finally ended up having hysterectomies, but they both were in the mid-late 30's and had had children. One had a complete one and the other just had a partial. Both said they wished they'd done it sooner!

The one with the full hysterectomy did say that going into menopause wasn't a picnic, but it was better than what she was going through with the endometriosis. She was in so much pain every month for years that she had forgotten what it was like to be pain free. A few months after her surgery she looked much younger, which she attributed to being free from pain.

Good luck with whatever you decide.

 

[lilaurora]

I was diagnosed with endometriosis last year. I didn't have pain all month, but during my period it was excruciating. My gyno performed laproscopic (sp?) surgery, removed all the endometric material and the ovarian cyst it was causing. She also told me that there is no cure, but that not having your period will significantly slow down any future growth. Since then I've been on birth control (or as the gyno called it "hormone therapy") since and no longer get my period. Life is so much better! I have no more pain or discomfort. The surgery was day/outpatient. I felt pretty good after the first few days and was back to normal in a week. I have 2 tiny incision marks on either side on my lower abdomen (which are still fading) and the third is in my belly button so it can't be seen.

 

[curious3069]

I had PCOS, endrometriosis and adenomyosis (endrometrial tissue actually grows into the muscle of the uterus). I feel lucky that I never had the pain associated with these but I did have periods that lasted for literally months at a time...horrible anemia to the point of blood transfusions. As bad as the periods were, the anemia was worse, I couldn't walk 10 feet without having to stop and rest. At 35 had a hysterectomy and 1 ovary removed. For me, best decision ever. Didn't go into menopause because I have an ovary remaining.

I know you are not looking for advice but your dr's somewhat flippant attitude is a little troubling. I also think you need to be very careful NOT to get into your head that a total hysterectomy is your only option...regardless of whether or not you want to have children, that is a huge step, especially at your age. I think you need to have another conversation with your Dr. about treatment options, a realistic talk about fertility with your condition and a plan to move forward. Why am I throwing the fertility thing in there? You are young. Really young and what you want at 21 is so so different than what you want at 35. I had my hysterectomy knowing that even if I would get pregnant, I would probably never be able to carry a baby. I didn't want children either but it is hard, really hard, when you have the option literally ripped from your body. And I knew going into it I physically couldn't have kids. Still hard and something I had to work through.

 

[clutter]

Have the laparoscopy before you make any decisions. Wait until you know what you are dealing with.

I was diagnosed in my early 20s. Because my endo involved my bowels (sorry for the tmi), periods were excruciatingly painful. Narcotic painful. I was put on some pretty heavy duty hormones to help, with little effect. Finally, my doctor put me on bcps non-stop to stop the cycle, because I was a little younger than you, and was staring at hysterectomy. I went without a period for 9 years. Heaven. I had been ambivalent about wanting kids, but decided to try in my mid-30s, and was successful. After having my dd, I went back on the bcps until I turned 50. We (dr and I) were hoping that I'd just slide through menopause with no problem. Well, that didn't happen. I had the hysterectomy.

Stopping the cycle has always been the treatment for endo. The crazy hormones I took are no longer used. But many doctors are using bcps to stop the cycle with decent results.

Yes, I recommend hysterectomy, but wait as long as you can. If you can find a bcp that treats you well and can stop your cycle, why do surgery? (One time, I realized that the generic version of my bcp was making me paranoid. I commented to my doctor how odd that seemed. Her response was "that's why I have so many available to try, minor differences can make major differences") Because of my bowel involvement, life post-surgery is not the same as life pre-surgery. For that reason, I'm happy that I put off this surgery for as long as I possibly could.

If you do a total hysterectomy this young, they will put you on hrt. Right now, I'm struggling with that. The slightest variances in hormones, can have huge repercussions. HUGE. Two years later, I'm still trying to make hrt work. I've had times where my cognitive ability goes away, times its my memory, at times my emotions, most recently it was my ability to focus. I'm still trying to find the mix of hormones that allows me to continue to take care of my professional and personal lives as well as I did before surgery.

It's such a huge step when there are other options you can explore.

By the way, ask around for good doctors, don't assume that your doctor is the best to help you make decisions. Doctors that specialize in infertility are better options, because endo is such a common cause of infertility.

Also, birth control pills reduce your risk for ovarian cancer, but a good doctor will keep an eye on you for that.

 

[StitchesGr8Fan]

Haven't read other responses but here is my story.

I'm 3rd generation to have endometriosis. Mine is the worst, about a 3.5 in a scale of 4. I've had it since I was 14. I know what you mean about the pain. It has spread to my bladder and intestines, causing spasms and digestion issues.

I was offered a hysterectomy at 20, but I wanted kids and was not ready to deal with the wicked menopause that also runs in the family.

So I've had 2 laparoscopies where they lasered off as much as they could, and then I stay on the highest dose of hormonal birth control that works. I only have 4 periods a year to combat breakthrough bleeding. It has worked. My periods have been normal for 12 years, only mild cramping. I was able to get pregnant on my own, which is a miracle. (And yes, pregnancy does temporarily stop the progression but I know you don't want that, so not an option for you).

I will probably need a maintenance laparoscopy one more time before i hit menopause. I learned after the first laparoscopy that if I don't keep at it with the BC I will need another surgery sooner. Since the second laparoscopy I've had over 10 years with no problems.

I still have lesions on my bladder and wrapping my intestines, and they will stay there. The laser could do more damage to my bladder, and I would rather deal with spasms than incontinence. I've been told it is VERY painful for them to unwind your intestines, laser them, and put them back in, so I will deal with the occasional digestive issues as well.

Good luck to you with whatever treatment you choose!

 

[jdb in AZ]

A close relative had a laparotomy at age 25 for a cyst. Turned out to be massive endo, which was a surprise because she didn't have monthly pain. Removing the mass cost her one ovary and half of the other. She did get pregnant but miscarried. After more endo growths and non-ending cycles she had a total hyster at 34 and was on HRT for over 20 years then tried to wean off the drug. The endo still wouldn't stop. It kept growing til it kinked off her bowel, resulting in four major surgeries, including an ostomy. She called herself a bag lady. Again, the docs were surprised that it was endo because she was in her late 50's at that point. She had to use the bags for 3 mos (eewww) while her system healed, then the dr reconnected her plumbing so she could at least go potty normally. All the trauma to her system caused about 1/3 of her hair to fall out, so she sported a wig for 6+ mos til it grew back. She also picked up a blood clot to her lung along the way but that was resolved with blood thinners. She also experienced the joys of peritonitis and sepsis. Enough already.

Fortunately, not all cases are that serious. Good luck with managing your situation.

 

[Feralpeg]

My daughter has endometriosis. She had the laparoscopy procedure a couple of years ago. It did help alleviate the symptoms for awhile. The doctor had her take Lupron injections which put her in a menopause state for a period of time. The injections are extremely expensive ($2000 a piece) and our insurance did not cover them. The insurance company said they were a medication and not a procedure. Again, they help for awhile.

The doctor put my daughter on low estrogen birth control to help control further growth of the endometriosis. Unfortunately, my daughter has began having migraine headaches with visual disturbances. Her gynecologist was concerned that the birth control could be causing the headaches and might make her prone to stroke. He sent her to a neurologist who took her off the birth control. Now, there is nothing preventing the growth of the endometriosis. In fact, she may need another laparoscopy soon.

My daughter is only 25 and wants children, thus having a hysterectomy is out of the question. Unfortunately, endometriosis can be a painful, debilitating condition. Some have much worse symptoms than others.

OP, I'd suggest trying the laparoscopy first and perhaps using a low estrogen birth control to reduce the endometriosis growth before considering a hysterectomy. Early menopause brings a whole new set of issues into play.

 

[mom2rtk]

I was diagnosed in my late 20's by laparoscopy after my finding out both of my tubes were blocked. Having the laparoscopy is an easy decision when you're trying to get pregnant and neither tube is functioning. Still, even without that consideration for you, I would still get the procedure.

Just don't expect it to be a cure all. For some it really helps. For others, not so much. Some of the deposits are so small that they cannot be seen or removed surgically. And your hormones continue to act on it month after month.

Hysterectomy could do the trick, but if you just remove the uterus, there could be deposits all over your abdomen that get left behind and still are stimulated by the ovaries. You can remove the ovaries, but I have heard doing so at such a young age really causes severe symptoms. If you then have to add back hormones to fight those symptoms, won't that just stimulate any leftover deposits still? There just aren't any hard and fast "cures". All you can do is consider the options, but consider that you can trade one problem for another.

PLEASE with a history of ovarian cancer do not consider bypassing the laparoscopy. The doctor cannot rule in or out a diagnosis like this without visualizing it.

I have been on an odyssey for years, fighting debilitating cramps and pelvic pan. Mine didn't get better after my first 2 pregnancies. For whatever reason, it finally did after my 3rd pregnancy.

Have you considered ovulation suppression with the pill? It has been my saving grace.

I sure hope things are better for my own 12 year old daughter as she moves forward with this portion of her life. I do know I won't let grass grow under my feet at the first sign there's an issue. My infertility doctor told me my most serious damage was done in my late teens. I absolutely believe him because I felt every bit of it.

Hugs to the OP. It really does suck. Ibuprofen didn't even hit the OTC market until I was around 20. (I just turned 50.) I'm in trouble if they decide that causes cancer or something.

 

[Blue Skies]

After years of infertility and severe pain I was diagnosed with endo at about age 23. I had a Laproscopy to remove a cyst the size of a grapefruit. I was then put on meds to put me in temporary menopause.

Later that year (a miracle) I was able to get pregnant.

The doctors told me if I didn't get pregnant within the next year I would likely never to get pregnant again.

Symptoms worsened and I had a laproscopy to get cleaned out. The pain was again so bad it was hard to function. I had a total hysterectomy at age 29. This was the best decision for me.

 

[Flrancho]

I was diagnosed with endometriosis at age 17 during an emergency surgery to find the source of severe abdominal pain. It was discovered I had a softball sized cyst on my ovary. They also discovered endometriosis at this time, which they believe was caused by retrograde menstration (the backward flow of menstral blood into the abdominal cavity instead of out of the body). I was also told due to the endometriosis and retrograde menstration, my internal organs down there are heavily scarred.

In hindsight, prior to the discovery that I have endo I always had extremely painful menstral periods, often downing 6-8, 200mg Motrin a day to stay on top of the pain. If I didn't take it or took it too late after cramps set in I would find myself starting to feel like I was going to pass out and/or get physically sick due to the severity of the pain. Gynecologic exams were/are also very painful. I experienced no pain outside of these instances.

After surgery I was placed on continuous use of birth control, never to have a period again until I met Mr. Right and decided I wanted to have kids. It was the hope with this that, not having a period, the retrograde menstration would stop, the spread of the endometriosis would stop along with it and the pain would go away. And so it was for almost ten years.

Earlier this year an incidental finding during a CT Angio found something suspicious on my liver. Several other tests later it was determined that I have an adenoma, a non-cancerous liver turmor that is known for spontaneous rupture and/or turning into cancer over time. The tumor is generally caused by a glucose storage disease such as hypoglycemia or diabeties (I have neither) or due to long term use of hormones, such as birth control pills. It was determined that this was probably the likely cause of the adenoma. I was forced off the pill due to the tumor, and in fact can never take any form of hormone again. The hormone is what causes the tumor to grow, possibly rupturing and/or turning malignant. The hope is that off the hormone the tumor will shrink and disappear; if not I'll be looking at liver ressection in a few years. I can also not get pregnant until the tumor is gone/removed as the hormones during pregnancy can cause the tumor to grow, and either the cancer or a rupture of the tumor could be lethal. Not to scare you away from taking the pill; developing an adenoma from long term birth control use is rare, but can happen. So, now I'm back to square one. Retrograde menstration is back, endometriosis can spread; with only one ovary now cycles for me range from sharp knife-like jabs of pain to no pain at all. There's really not much they can do now.

Like you, my GYN is opposed to hysterectomy due to my age. Surgery to remove cysts/lesions hasn't really been discussed since outside of my cycle and pelvic exams and such I am relatively asystomatic.

 

[BlueStarryHat]

I was diagnosed with Endometriosis in 2000, after I just couldn't stand my period pain any longer. I turned out to have the worst case of Endo that my doctor had ever seen. My uterus was a compact ball of scar tissue with both ovaries fused to it. I had adhesions on all of my major organs including my (not to be gross) rectum which was inhibiting my ability to 'go.' I had a laparoscopy and was symptom free for two years. I had another laparoscopy in 2002 followed by a series of shots of Lupron to put me into artificial menopause for six months. After that, I had no more problems.

The only lasting effect of the endo is that I'm now in menopause at only 45.

 

[Conservative Hippie]

I was diagnosed with endo at 19. This was after nearly a year of doctors who couldn't figure out what was wrong with me because, "it sounds like endometriosis, but you're way too young for that." I had a laproscopy and a 6 month shot of Lupron (chemically induced menopause) and for a while I could manage it with regular birth control pills and rx pain meds. Then about three years later it got bad again, and I had a new gyn who put me on an experimental endo treatment using a breast cancer medication (can't think of the name but it blocked your body from making estrogen) and a low-dose estrogen BCP. That worked great for two years before the side effects got to be too much. By this time I was almost 25 and had been married for three years. My dr said my options were another laproscopy and Lupron, or try to get pregnant and see if 1) I can and 2) if it helped. He told me to try for 6 months and then recommended fertility treatment. DH and I had decided on no fertility treatment if I couldn't get pregnant. So we decided I would quit all treatment and try for a baby. It was awful, but it only took 3 months!! After DD was born all my symptoms went away....for a little over two years. Then one month I felt those familiar pains (which, btw, I had heard someone say endo is worse than childbirth...for me it was very, very close). So we knew we wanted more children and decided it might as well be then. DS is three now, and I am pregnant with baby #3 and I haven't had any endo pain since 2009. I realize my experience is not typical but I feel really, really fortunate to have been able to get through endo AND still have kids. I realize it might come back some day, but for now I count my blessings.

 

[quentina]

Have the laparoscopy before you make any decisions. Wait until you know what you are dealing with.

I was diagnosed in my early 20s. Because my endo involved my bowels (sorry for the tmi), periods were excruciatingly painful. Narcotic painful. I was put on some pretty heavy duty hormones to help, with little effect. Finally, my doctor put me on bcps non-stop to stop the cycle, because I was a little younger than you, and was staring at hysterectomy. I went without a period for 9 years. Heaven. I had been ambivalent about wanting kids, but decided to try in my mid-30s, and was successful. After having my dd, I went back on the bcps until I turned 50. We (dr and I) were hoping that I'd just slide through menopause with no problem. Well, that didn't happen. I had the hysterectomy.

Stopping the cycle has always been the treatment for endo. The crazy hormones I took are no longer used. But many doctors are using bcps to stop the cycle with decent results.

Yes, I recommend hysterectomy, but wait as long as you can. If you can find a bcp that treats you well and can stop your cycle, why do surgery? (One time, I realized that the generic version of my bcp was making me paranoid. I commented to my doctor how odd that seemed. Her response was "that's why I have so many available to try, minor differences can make major differences") Because of my bowel involvement, life post-surgery is not the same as life pre-surgery. For that reason, I'm happy that I put off this surgery for as long as I possibly could.

If you do a total hysterectomy this young, they will put you on hrt. Right now, I'm struggling with that. The slightest variances in hormones, can have huge repercussions. HUGE. Two years later, I'm still trying to make hrt work. I've had times where my cognitive ability goes away, times its my memory, at times my emotions, most recently it was my ability to focus. I'm still trying to find the mix of hormones that allows me to continue to take care of my professional and personal lives as well as I did before surgery.

It's such a huge step when there are other options you can explore.

By the way, ask around for good doctors, don't assume that your doctor is the best to help you make decisions. Doctors that specialize in infertility are better options, because endo is such a common cause of infertility.

Also, birth control pills reduce your risk for ovarian cancer, but a good doctor will keep an eye on you for that.

I had a total done at 31.....very young by my doctor's standards however; I have never taken a single hormone! I feel great, no flashes of any sort. Doctor says blood work has me in total meno...says I am the poster child for it

 

[cbg1027]

I guess I forgot to mention in my op that I have been on HBC for 10 years due to PCOS. I started it at 18, was on Yasmin for many years, and then the last 3 years in a row I have changed the type of pill because my periods had been getting progressively worse after years of having really easy periods.

I haven't had too many episodes where things are painful enough to take drugs, but last night it got so bad I took a Vicodin.

I just quit my job, so I lose my insurance in a few days. When DF and I get married in Nov, I will go on his insurance. So the way I left things with my doctor was to try changing the BC pill again, and when I get my new insurance to touch base, see how things are, and go from there.

Thank you sharing your stories everyone.

I had PCOS, and had abdominal pain on one side for some time (maybe around six months). My endocrinologist sent me for abdominal ultrasounds to monitor the ovarian cysts and an actual tumor was found, which turned out to be malignant.

I had a complete hysterectomy, with removal of my ovaries, when I was 37. I had already had my only child and Dh and I decided not to have any more already.

Being a nurse, I knew how deadly ovarian cancer was (and how it can go undetected for so long until its too late), so when they were removing the tumor, I said take everything else with it.

I am grateful everyday to have my life! That being said, menopause has been a struggle. I was also a dancer who struggled with my weight because of PCOS, and now it's really out of control. I have that typical abdominal belly bulge that you see in tv commercials. I was on hormones for years and stopped them last year, so sleeping is now a challenge. Hot flashes are out of control too.

Now don't get me wrong, I am extremely grateful to be alive, but menopause hasn't been that great. Is there anyway you can just get ur ovaries removed? And can u get a more thorough assessment for ur complaints (did they do any kind of exam, or just diagnose you from ur symptoms?)

Whatever you choose, good luck and blessings.

The dr did a full pelvic exam and said she felt some nodules. She said to get a confirmed diagnosis they have to do the laproscopy.

I had PCOS, endrometriosis and adenomyosis (endrometrial tissue actually grows into the muscle of the uterus). I feel lucky that I never had the pain associated with these but I did have periods that lasted for literally months at a time...horrible anemia to the point of blood transfusions. As bad as the periods were, the anemia was worse, I couldn't walk 10 feet without having to stop and rest. At 35 had a hysterectomy and 1 ovary removed. For me, best decision ever. Didn't go into menopause because I have an ovary remaining.

I know you are not looking for advice but your dr's somewhat flippant attitude is a little troubling. I also think you need to be very careful NOT to get into your head that a total hysterectomy is your only option...regardless of whether or not you want to have children, that is a huge step, especially at your age. I think you need to have another conversation with your Dr. about treatment options, a realistic talk about fertility with your condition and a plan to move forward. Why am I throwing the fertility thing in there? You are young. Really young and what you want at 21 is so so different than what you want at 35. I had my hysterectomy knowing that even if I would get pregnant, I would probably never be able to carry a baby. I didn't want children either but it is hard, really hard, when you have the option literally ripped from your body. And I knew going into it I physically couldn't have kids. Still hard and something I had to work through.

I'm 28 now, so I've know for over 7 years that I don't want children. But it is a scary thought to think that if I had a hysterectomy, there would be no option. I do admit it's possible DF and I could change our minds since we both have once before. So, yes, not having the option is scary even though I feel strongly about not wanting kids.

 

[stephaknee]

Before your follow up, I was going to say try BCP. I do not get a period on the pill that I have now and my symptoms have improved dramatically. I think the Mirena IUD is also a common treatment for Endo and an alternate to surgery.

 

[curious3069]

I'm 28 now, so I've know for over 7 years that I don't want children. But it is a scary thought to think that if I had a hysterectomy, there would be no option. I do admit it's possible DF and I could change our minds since we both have once before. So, yes, not having the option is scary even though I feel strongly about not wanting kids.

Sorry I got your age completely wrong!!! It is a strange thing that having the option removed, even though it wasn't really there anyway and it's something that you don't even want, is difficult. It wasn't like I was constantly crying or anything like that but for awhile I went through the just-think-how-things-could-have-been-different-and-now-I-don't-even-have-the-option phase.

Good luck with your Dr., I hope you can get some relief and a plan of attack so things don't get worse!!!!!