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Need Help With Endometriosis!!!!!! Need Help With Endometriosis!!!!!!

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Unread 06-07-2003, 10:34 AM
Need Help With Endometriosis!!!!!!

I was diagnosed with endometriosis 2 months ago and i had the laparoscopy done and they lasered it off, i am still in an extreme amount of pain daily, and i don't know what to do, i am very very young and i am not ready for the Lupron Depot shot or a hyterectomy. I also get cysts on my ovaries and they have removed those also but they just keep coming back and will never go away and cause me so much pain. I don't know much about the disease and i would like as much info as possible, is anyone having a hysterectomy due to endometriosis? does it always come down to it, does endometriosis come back every period cycle? i need to talk to someone who has been through it all and will give it to me straight!! Please any info at all would be of much help!
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Unread 06-07-2003, 11:05 AM
my experience with endo

Hi there! Sorry to hear you're dealing with this, sounds like you are in the same situation with recurring cysts and endo that I've been in for years. The first standard treatment is bc pills, normally the doc will try these for a few months, if you don't experience any relief you may be advised to try "doubling packs" which means that you take two packs back to back and therefore won't experience a normal period. If no relief is found with the bc pills, your doc may recommend you have another lap/laser surgery. I've had three lap/laser surgeries, with the endo recurring a minimum of 6 mos. after each procedure. After my last lap in January, I didn't experience any relief at all. I've done Lupron twice - the first time around the side effects were pretty bad, but I did experience some pain relief. This second round, I've had all of the side effects and none of the relief, so that has felt rather defeating! Endo is very prevalant within the women in my family, and you can basically draw the line down the middle of us - three have had children and haven't had a recurrence of the endo. Three more - including me, have had more than one child and still had a recurrence - the other two have had hysts and I'm scheduled for mine June 10 --- yikes this coming Tuesday!!!!! So, endo doesn't necessarily guarantee that there is a hyst in your future. However, it does mean that you may be faced with that decision somewhere down the line. For me (I have two young children), it has gotten to the point that I feel I'm not being the kind of mom that I want to be. I feel so tired all the time, and am almost constantly in pain - I'd rather be able to take care of and enjoy the children I've been so blessed with than suffer this way to preserve the chance to have a third should we decide that in the future. So, what I'm getting at is that if you have to make the choice to have a hyst, make sure that you really feel it's your only choice left. That way you won't have to question it later, and it will make the fear of surgery more bearable, knowing that you'll come out on the other side a pain free person! I'll also recommend that instead of a standard ob/gyn you see an infertility specialist. Since endo is one of the leading causes of infertility in women, infertility specialists tend to be more well versed in treatment. That's what I found after wasting SO many years changing docs. Good luck!

LAVH/BSO June 10, 2003
Unread 06-07-2003, 11:28 AM
I did....

I had stage 4 endo and had a cyst that ruptured 3 years ago, then had one removed by lap. Then a year later I had the right ovary removed because it was encased by a cyst and basically causing too much trouble. I tried BC pills, but they only created increasing cysts for me...and horrible side effects. It was horrible.

I opted not to try Lupron, only because my experience with BC pills indicated that I'd likely have trouble with Lupron too.

So, I had the hyster. I still have the left ovary, so I may have some reoccuring endo, but it's less likely than if I had my uterus and shed through the monthly cycle. This is the FIRST time in 3 years I've been without pain. No lap ever releived my pain and I found out through having the hyster that the endo was in the uterus, along with adeno and fibroids. No wonder I was in pain, lol

There is a message board I belong to for endo and fibroids. There's a couple of books that helped me understand it too. Send me a message here and I'll write back to you if you'd like, with the info.

A hyster is not your only option, but if nothing else works and your pain is interfering in your life it may become an option you want to pursue. Do NOT allow a doctor to push you into anything for treatment. There is no known 'cure' for endo and nothing, not even a hysterectomy, is 100% sure of curing the endo. My Mom had ando and her hyster ended her pain for her...I'm hoping for the same results. So far, so good.

Take your what you can about endo, talk with other women (the endo message board would help you with that) and decide what your quality of life is. I got to the point that I was on vicodin for months and was actually feeling suicidal because I couldn't stand living in pain anymore. It was constant pain and I was tired all the time. I felt old...really old. I had to do end that nightmare. That's why I chose a hyster.

Gosh...I don't know if I'm helping you here...but you can send me a message privately and I'll try to help. I'm just in a bit of a rush this morning so I'm typing fast.

Hope this helps...

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Unread 06-07-2003, 11:37 AM

Welll, i was only 18 when i was diagnosed with endo and now i'm just 31 so i think i know how endo has affected me.
I think it's a very individual condition. For some women they have servere endo and very little pain and others have lots of endo and it causes them excruciating difficulties.
There are many theories about how/why women get endo, but basically it can grow on any part of their bodies. It's favourite parts tend the reproductive uterus, ovaries, tubes, but it also like the bowel, and bladder. In very very rare cases it grows elsewhere, but this isn't common.

As i said, i've had endo for most of my life. I think it started for me when i first had periods at 9. It just seems to like my body!
But i tried everything and the best thing i've ever had has been a drug called Depo Provera.
There are two types of drugs to control endo...those that mimic the menopause and those that mimic pregnancy.

My advice to you would be three fold 1) Find yourself a fantastic doctor. Now this may sound easy, but in some cases it's not that good. I've been under my gynaecologist for 9 years now, and to be honest she's an angel in a white coat. I can talk to her about anything, and i know she always tells it to me like it is. Find somebody you can trust.
2) Do NOT read all the horror stories about endo. There is always going to be somebody - like me really (i've had 14 ops for endo, and can scare with the best of them). But YOUR endo is unique to you. You may find a treatment that works fantastically for you. You MAY NOT need to have a hysterectomy ....but this really is a last gasp treatment. In my opinion no reputable doctor would give you a hysterectomy as a first line treatment.

3) Read stuff on endo. Read stuff on the medications you are offered and make the best decision that you can for yourself at the time you make it. By that i mean, don't beat yourself up about "well, what if, what if, what if"..cos believe me, that will drive you crazy.

I think of myself as a survivor. I have just had my hysterectomy three weeks ago. For me, this was the best and only choice left. But i've had every treatment going, and then some! I don't regret having a hysterectomy. I am 31, i don't have children, and what i do regret is giving my life, my 20's to endo. Don't let it rule you, don't let it define you.

I hope that you do what is right for you, and make informed decisions with the help of good doctors. Above all, don't suffer in silence. Talk to your friends and family.
I hope that you find a treatment that works for you.
All the best
Ps. All of the above is just opinion...mine!

TAH - May 12 2003
Diagnosed endo - April 1991
Unread 06-07-2003, 12:05 PM
Need Help With Endometriosis!!!!!!

Hi there! I had some endometriosis which I had lasered out 8 years ago. My right ovary was covered in cobweb-like adhesions and stuck to the abdominal wall, with one endometrial cyst on the ovary. The pain was extreme. After the laser surgery--done laparascopically--I continued to have pain. However, I was able to get pregnant about 11 months later and have a 7 year old now. About 2 years prior I had a miscarriage. I had my son and breastfed him for 1 year. When he was 8 months old my period returned--and I knew it would as I had that familiar pain about 2 weeks before...I continued with pelvic pain, heavy bleeding, etc. I knew I had at least one fibroid all these years and was told there was polypoid tissue as well. On 3/28/03 I finally got around to taking care of me--I'm 48--and have had problems probably 12 or 13 years--I had the LAVH and got to keep my ovaries. Much to my surprise the doctor said she found no more endometriosis!!! Yeah!

However, I did have adenomyocis--which can also cause pain--it is like endometriosis internal in the uterus...the endometrial lining grows into the muscle wall--and can cause pain and heavy bleeding--as can fibroids.

My doctors have been telling me for more than 10 years the options were to live with it, or have a hysterectomy. I would have a heart to heart with the doctor about quality of life. I never tried the Lupron, but tried some other progestins and meds which made me feel really bad--morose.

Anyway, I hope you find something that makes things tolerable--other than staying pregnant all the time LOL! I just wanted to say it is not necessarily only endo which can cause your pain, but the doc cannot tell you whether it is recurring or you have additional problems. Yes, it hurts along with your monthly cycle because it becomes inflamed with your cycle.

Mary W
Unread 06-07-2003, 02:37 PM
Need Help With Endometriosis!!!!!!

I was diagnosed with endo 8 years ago at age 38. The doctor who performed the laparoscopy to diagnosis the endo told me I needed a hysterectomy, and then promptly retired! I read all I could about the disease, and went fully armed to a new doctor. Needless to say, I knew more about endo than she did. My first course of treatment was to go back on BCP which I had discontinued after a tubal ligation 5 years before. I had about 5 years relatively pain free.

When things began acting up again, I did Lupron shots for 9 months mostly to see if a hysterectomy would "cure" me. I had almost a year pain free, and no side effects other than hot flashes. I was then put on BCP with no break in between, so I did not have a period. It took another year before my pain escalated to the point of no relief, and made my decision to have a hyster. I did 3 more months of Lupron before I could arrange surgery.

Unfortunately, more people seem willing to share their "horror" stories, and too few communicate their successes about treatment options or ultimately hysterectomies. Hyster Sisters has been a great cource of information and comfort to me.

I am almost 5 weeks post-op, still tiring very easily, and don't want to go back to work! But, I already wish I had done this a few years ago.

I wish you luck in your decision making.
Unread 06-08-2003, 12:31 AM
Need Help With Endometriosis!!!!!!

It's very hard to improve on all that your endo (((sisters))) here have said. There have been some references here to "adeno" which means adenomyosis. When it's internal to the uterine wall like that, it's almost impossible to diagnose by anything other than (sometimes) MRI.

The reason I bring up adeno is because adeno IS cured by the hyst and in fact no hormonal or other therapy will do anything for it. Endo is another story...some women are helped enormously by therapies that range from continuous BCPs to bio-identical progesterone (an option that I wish I'd known about when I was young) to Lupron, etc. And finding yourself a doctor who really cares about endo (kind of tough, as they are nearly as helpless in the face of it as we are) makes a HUGE difference. Do you have polycystic ovaries, with the repeated cysts? The hormonal therapies for that may differ from "just" endo therapy.

Also, as Mary points out, a key part of the endo "cycle" is inflammation. Most women, it turns out, have endometrial implants within the pelvis. However, most of those endometrial implants do not convert to what we know as endometriosis lesions (with unchecked blood vessel growth, bleeding with hormonal stimulation, and ability to replicate and proliferate outside the uterus). In those of us with endo, it is increasingly thought that our bodies work overtime to attack the implants as "foreign", causing them to alter in nature and creating a vicious cycle. What happens then is that the lesions secrete a substance that creates even more inflammation, and the cycle continues.

That being said, it is worth looking at some interventions that are also recommended for women with auto-immune things, like eczema and fibromyalgia. Diet can help enormously; caffeine and other toxins, like sugar (and "high-fructose corn syrup) can all contribute to an environment where inflammation can flourish. Many women have found that supplements, such as Omega-3 and Evening primrose oil, can help with symptoms. And keeping an eye on intestinal health (eating enough fiber and drinking enough water, for example) can help also, particularly if you're using any narcotic form of pain relief. Exercising any time you can is also useful -- when I've been able to get back to my running (between injuries and surgery), my endo pain always improved.

Keeping a journal is actually pretty useful. Sometimes you can point to particular foods or intestinal "patterns" that help define interventions you might consider. For more information, we have a Resource Forum which is sort of "All Things Endo". I know that my favorite endo websites are and the Endometriosis Association.

I think Blade's advice:
2) Do NOT read all the horror stories about endo.
is right on the money. We all have such an individual experience of this, and widely varying tolerances to pain. I know that I worked for years with knife-like pains on a daily basis...I just had gotten used to it, I guess . It actually made it harder to treat, as my endo had progressed to the point where the hyst was no longer a "choice" but rather mandatory. There's a lot of information out there, and it's so hard to sort out what is real versus the seeming over-confidence of so many surgeons ("oh yes, we can get it all with the hyst"). As you say, too, you're young, and I totally understand your reluctance to take a step which has such an uncertain outcome and such significant implications.

If you look, BTW, for a member named "Candida": she had a hyst at 19 for severe endo. Her story may be useful to you as you try to sort out your options.

I know it's not much, but here's a cyber- in pain gets soooo old...


Unread 06-08-2003, 08:52 AM
Hey Fussybird!(Rita)

Hey thanks for your support, let me tell you a little when i say i am young i mean real young i am only 19 years old and i have been fighting all this pain for 2 almost 3 years now,and they recently just diagnosed me i go back to see my gyno on the 30th and i am going to tell her everything, i sit with pain everyday, and i was also wondering if endo comes back every period cycle, for instance i had a laparoscopy done in April and all was well for about 2 weeks then about a month ago my pain had returned and it is getting worse, is that how it comes back?? anyway i would like to know the info for that website and everything you now, you can fill me in, i could use as much info as i can get!! Thanks so much !!

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