After 17 yrs I can't take it anymore....opinions greatly appreciated

Hello there everyone.....My first experience with gynecological problems was at 15. My mother took me to ER and they told her to take me home, I was ovulating. The very next day I went to my doctors without an appointment and begged for him to see me. After pressing down on my pelvic area 3 times he sent me straight to the hospital to have a large ovarian cyst removed. Since then I have had 3 miscarriages, 4 laparoscopy & D/C, 1 myomectomy, and numerous drug therapies. I was also told I had fibroids inside/in lining/outside of the uterus. Now I have been told that I have endo on my ovary which is quite bad and uncontrollable, heavy uterine bleeding with extreme pain (all symptoms I have had to live with already). My ob/gyn has told me that I have 3 options: get pregnant, Lupron injections or Hysterectomy. I would love to have another child (I have a 10 yr old already, so I know it's possible) but we have been unable to get pregnant because of the problems. It has been very difficult for us. I have been depressed, fatigued and frustrated but yet hopeful. This has also carried over to our sex life and even though my hubby has been my rock and best friend I know it must be hard for him too. And I hate the way I feel every day. Fatigue, pain (severe enough to make me vomit), blood loss etc. starts as soon as I wake up and my little guy sees his mom sick all the time. I'm at my wits end and my doc has not been helpful at all. At my last visit (before operation #5 on March 2, 2006) he simply said that if the operation (pregnancy, Lupron or Hysterectomy) didn't work I would have to learn to live with it but gave me no suggestions, ideas, or resources on how to do this. I am trying to use the internet to find places to communicate with others and so far so good. Any suggestions or opinions would be greatly appreciated whether good or bad, I can handle it...lol. Honest.

Welcome to the site! I am sorry for your health situation. Sounds like you have already tried a lot of options and alternatives.

I can not tell you what is best for you but I can offer some resources. But I can tell you about my decision though. I had my hyst because of stage IV endo and non stop bleeing. A few weeks before my hyst I had a lap, hysteroscopy, and D&C. The D&C did not work but the lap had allowed my dr to see and cauterize most of the endo. So, as I had been bleeding for over two years by that point, I had a hyst--due to my cirucmstances and the location of my endo, none of the drug choices were a viable option. Thankfully, I had already had two little boys, whom my GYN informed me were miracles.

Some ladies have had success with Lupron. There are some threads on the site about Lupron--use the search tab to the upper, right of your screen and search for Lupron. Keep in mind, often when people have a positive experience with something, they don't take the time to find a place to note that information. So you will see a lot of negative information about Lupron. Having not tried it--due to migraines--I can't offer personal info.

Obviously if you are attempting another pregnancy, you would want to try an non-sterilizing treatment available. Have you ever talked to a reproductive endocrinologist? They often have additional training with endo, and could be able to attempt to treat your endo as well as help with pregancy issues.

I highly recommend at least a second opinion before having a hyst. Additionally, talk to a dr knowledgeable about endo and HRT, if you your decision includes removing your ovaries.

Here are links to the resources we have that may be helpful:
Endo/Adeno Resources
Fibroid Resources

You can also search for any other topics that interest you in our Resource Database.

Only you can decide what quality of life you can live with but I hope the information and support here on the site will be beneficial to you as you make your decision.

HI

I am so sorry you have been experiencing so much pain and frustration. I know how frustrating the whole situation can be especially when our options are limited. You have been through so many different options at trying to control your pain.

I had my hysterectomy for endo, so I do understand some of what you are going through. The thing with endo is that it is very complex and not all doctors are knowledgeable in the best treatments available. Unfortunately there is no guarantee "cure" for endo.
Only things that can lessen the pain or keep the endo at bay.

Alot of the treatments (such as Lupron) may work as long as you are using them. Unfortunately once the treatments are stopped, the symptoms may return.

I wanted to share some treatment options that are available. It is quite possible that some of your problems are hormone related. Estrogen stimulates endo and progesterone inhibits the growth of endo. It is thought that women who have endo may have estrogen dominance. Simply meaning that they are not producing enough progesterone in ratio to the amount of estrogen.

Progesterone to treat endo

Here is a link to different medications used to treat endo.

Medications for endo

Mirena coil to treat endo

Diet and nutrition for endo

Surgical excision of the endo following progesterone treatments may provide the best long term pain relief.

Surgical excision of endo

Finding a knowledgeable doctor may be a very good option. They will have the most up to date information at helping control your endo.

Finding an endometriosis specialist

Here is a great link about the facts of endo. There are also some support groups and discussions with other women that may be helpful.

Endometriosis association

Best Wishes and keep doing your research Knowledge is power.

Both replies have been very helpful, Thank you so much for the info. I have been told that I do have higher progesterone than estrogen and have used Provera & Medroxyprogesterone. The problem was that I swelled so much that I couldn't use them. Even with a mild diuretic, there was no improvement. Birth Control isn't an option either, I have DVT. My doctor just shakes his head during every visit and I feel like I will forever live with this pain. Now that I have some resources I may be able to find my way through all of this. I will most definately get a second opinion and maybe a third. I'm not saying that my doctor is awful, he's just not right for me. I understand now that endo is something that requires alot of do-it-yourself research and most of the time it's a trial and error process. One thing I do have to research is the hormone therapy after a hysterectomy. I didn't realize that there are other options. I can say that your replies have managed to put my mind at ease enough so that I can do some reading and actually learn what it is I'm reading and not just stare blankly... Thank you very much girls, Hystersisters is very lucky to have you.

HI

Provera and Medroxyprogesterone are both synthetic progestins and there's a worlds of difference between progestins and natural progesterone.

Natural progesterone is identical to the same progesterone our ovaries make.

Progestins are patented, chemicalized, progesterone substitutes and usually have many undesireable side effects.

You may find that natural progesterone will relieve much of your endo pain without the side effects that you had from the progestins.

Here are a few links to the resources database about the difference between the two and also some information about hormones.

https://www.hystersisters.com/vb2/article_97232.htm

https://www.hystersisters.com/vb2/lin...o=browse&cid=3

One more word of caution, if you have DVT then estrogen will be a big no no after your hysterectomy.

If there are any plans on removing your ovaries, then you would be in instant surgical menopuase. The symptoms of menopause are very challenging to live with even with the use of estrogen, but without it....

This may be a big deciding factor to consider.

I hope this helps and maybe a second opinion will bring good news.