worried and confused

I have been having problems with bad ovarian pains that come and go and I have other symptoms , painful intercouse and constipation/diahhrea that my Dr. believes are consistant with endometriosis, even though I have children and I don't have break through bleeding between my periods. I have asked her about the chance of me having ovarian cancer but she just dismissed that as not being the problem or needing to have blood work done, because of my insurance not going in to effect until the beginning of august, i now play the waiting game until then so I can see a specialist.My Dr. said that I will be having lapriscopy done to find out if I have endometriosis. Has anyone else gone through anything like this?? Or had any of the same symptoms as what I am having?

Hi Rose777

I had lots of ovarian pain with my endo; painful intercourse and also diarrhea during menstruation. I have 2 children and never had break-through bleeding either. Although many women with endo do experience infertility, many women who’ve had children have endo too. Here's a link to several Endo Articles from our resource section.

I worried about cancer when they found a complex ovarian cyst. My doctor admitted it needed investigated, but was optimistic it would be benign, which it was. Here is a link about the Symptoms of Ovarian Cancer. I’m sorry your doctor dismissed your concerns. I think sometimes they might not realize the difference between dismissing our concerns and offering reassurance that are worries are not likely, and explaining why not. The CA-125 test cannot be reliably used to screen for ovarian cancer. The scores are not always indicative of whether the condition is benign or malignant.. Many other conditions can affect the test results, endo being one of them..

Have you had an u/s done yet? Many docs will order a transvaginal ultrasound when investigating pelvic pain. Mine always did both the pelvic and then the transvaginal. Ovarian size, cysts, etc. can be diagnosed and monitored this way, but direct viewing by the laparoscopy you’ll be having would be necessary to diagnose any endo and they'll be able to assess the health of your ovaries then too.

I know the waiting stinks. I hope the time passes quickly for you. In the meantime, you’re doing your homework and gaining knowledge, so you’ll be able to make good decisions,,,, and that’s great!
Best wishes & s,
Beth

Thank you Beth for the info and it is comforting to me knowing that I am not alone with this, I have been told that I have cysts on my ovaries by a former Dr. many years ago, who told me that the only way for me to control them was birth control pills(tried it- pills made me sick so I said forget this!!) About 6 years ago, I did have a pelvic ultrasound done but at the time nothing was found so my Dr. then said "Not too worry cysts come and go." As the years have gone by of course the symptoms have gotten to where they are now- I do have a new Dr. and she says she is 95% sure that it is endo. but she wants me to see a specialist who is going to do the laproscopy. Not quite being 40 I am of course worried about what they will find, May I ask if you had kidney pains also with your endo?? thank you again for the sites to check out - I will definitely check them out!!! rose777

Hi Rose,

I wanted to let you know that you are not alone with your symptoms.

As (((Sistabeth))) mentioned many women are able to have their family and still have endo. I have 3 children and my endo was not found until after they were born. I never experienced break through bleeding either. I also had painful intercourse but did not have problems with constipation or diarrhea. I did however have problems with my bladder that I never knew was from the endo until the time of my surgery. I use to take Detrol for bladder urgency (which never worked) but come to find out my bladder was covered with endo and that was keeping it from expanding.

I am very happy to hear that you will be seeing a specialist for your endo and laproscopy.

Hopefully the specialist will be able to help give you a definent diagnosis and will be able to explain the best treatment options if they do find endo. I think it is best to do some reading and researching on your own. The articles shared above are very helpful. There are a few more precautions women need to think about when they have endo.

Best Wishes and I hope you find your answers soon.

Tabby,
Thank you for your input on my post- everyone here is so helpful. I never realized how many problems can stem from endometriosis, i never thought about my bladder problem having anything to do with it,my problem being after I go "tinkle" no matter how long I wait, as soon as I leave the bathroom, I will have a leakage problem, My old Dr. told me to wear sanitary napkins throughout the day- yeah like that is what I really want to have to do for the next 40 years, so I am glad my new Dr. is taking my symptoms more seriously, I am still reading some articles and trying to see what other direction besides having hysterectomy there might be, I am really not sure about the effects afterwards that I will have,mood swings, and medicines that I might have to be on etc. It can be a bit confusing- If you have any other advice I gladly will accept it- Thank You,
Rose777

Rose,

I too have ovarian pain that comes and goes. No actual painful with intercourse- not since having two kids. Now its pain that starts a day or two after intercourse.

I experience constipation 4-7 days past period followed by diarrhea. I have Zelnorm on hand but am too afraid of exacerbating symptoms of diarrhea to take it.

Ovarian cancer... I specifically asked doctor about the risks and possibilities. I was told that although he would not/could not rule out that out, he really truly believes that it is unlikely. But since we both understand that CA125 levels can be elevated with endo, no blood was drawn. I am ok with the that, but it doesn't lessen my fear of OVCA. No real reason to fear it except my mother's history of breast cancer. This is my own fear, I have absolutely nothing to back it up.

I have other symptoms not addressed in your post.

I have not had endo diagnosed in the traditional method that most here have. It was a little different for me.

I had a 'self diagnosed' hernia. Wasn't a hernia, it was an endometrioma in my abdominal muscle. I now have small masses on my ovaries. The radiologist has said that they are either endometriomas or neoplasms. I'm betting that it is just endo. But I plan on having the masses removed to prove it. Whether that involves just the masses or both ovaries, well, I am still deciding.

I have an appointment today to check my ovaries. Hopefully the masses are smaller. Hopefully.

Dee

Hi Rose

There are a few alternatives to helping with your endo that does not require a hysterectomy. For some women the alternatives are enough to relieve their pain, but unfortunately for others it is only temporary. I personally believe trying other options first is a very good idea. I think a hysterectomy is a good option when other treatments have failed. A hysterectomy does not always cure endo and some women still have problems even after a hysterectomy.

One thing to consider is that if you do decide to have a hysterectomy, there is a higher success rate of treating the endo if the ovaries are removed which leaves you in instant surgical menopause. For some women that can be a very challenging experience because doctors may require a waiting period of 3-6 months before starting estrogen therapy due to the estrogen stimulating any possible remaining endo.

When the doctor does the laproscopy they should be able to remove some/all of the endo for you. For many women this is enough to help with pain relief that may last for either a few months or even several years. Alot depends on how much endo they find, the location of the endo and the doctors ability to remove ALL the endo.

If the doctor is not able to remove ALL the endo, then it may continue to grow and spread again due to the ovaries producing estrogen. Estrogen is what feeds the endo. Just as estrogen feeds the endo....another hormone we produce called progesterone helps inhibit the growth of the endo. Progesterone to treat endo

I have read that surgical excision of the endo may provide the best long term pain relief. Here is an article about Excision...click here

The best possible chance may be to have surgical excision of the endo and then also use progesterone therapy after the excision.

There are other medications that doctors may try such as Lupron that put you in a temporary menopause in order to stop menstruation and help control the spread of the endo. This is a good option for some women but the mediaction may have side effects and usually once they are stopped and menstruation starts again.....you will experience the same symptoms all over again. Medications to treat endo

Endometriosis is a very complex disease that not all doctors are familiar with the best approach to treating. It can be a tough and confussing experience once you have been diagnosed with endo. I think it is wise to use an endo specialist to help you make your decisions and do your own research in order to become aware of your options and help make decisions with your own health care.

Try not to feel overwhelmed with the information you read, take your time with reading the articles and become informed of the best possible treatments available.

Many BIG
's

Dear Dee and Tabby, Thank you again for the info, Dee, I also have the concern of ovarian cancer due to my best friend passing away a few months ago and because of her is why I switched Dr.s and had a liquid pap done . If I wouldn't have switched, I would be suffering in pain from now on, never knowing that something was wrong- I am glad that I know now that I have options and don't have to rush into having a surgury first, I am thankful for the sites and the info. I also am going to find out from my Dr. what she thinks about other options to try first but I believe she is going to leave all of that up to the specialist, so I am trying to make sure I know exactly what I should be asking the specialist the day I go for my laproscopy. I believe by then, I will be very informed and can understand what the specialist will be telling me. Dee, I hope everything goes well for you, please keep me informed on how you are doing. Thank You Tabby-Rose