newly diagnosed with endo & looking for advice.

**leahbia_83008** · 10-23-2011 08:05 PM

i will try to make this as short as possbile but still provide you all with enough of my health history to make an honest opinion about my case. here it goes:

for starters, i am a relatively healthy 21 year old female. the only issues i have been diagnosed with is high cholesterol, anxiety and depression, although i have been able to manage these conditions.

i have always had irregular & painful periods since the beginning of my menses at age 12. for years i was told it was normal for girls my age and that i would grow out of it. after becoming sexually active, i was put on the birth control pill at age 17 for pregnancy prevention and to help lighten my heavy, painful periods. i had done a lot of research on my symptoms by this point and knew in my heart i had endometriosis, although every doctor i saw was unconvinced so i was forced to suffer until getting put on the pill. my symptoms magically vanished.

fast forward three years later: one night my long-term boyfriend & i were having sex when i started to get an intense pain in my right hip. i was doubled over in my bed crying from the agony i was experiencing. i had convinced myself it was my appendix and admitted myself to the hospital. after hours of waiting patiently and numerous tests, i came to find out i had an ovarian cyst the size of a baseball! the doctor prescribed me pain medication and assured me it would go away on it's own, but i needed to find a new gynocologist for a follow-up in 6 weeks. i also decided it would be best for me to get off the pill since the artificial hormones were causing me a lot of agony (headaches, mood swings, etc.) so when i made an appointment with my new doctor, i wanted to discuss with him getting the paragard iud.

i finally made the follow-up appointment after waiting nearly 3 months to see the doctor of my choice. after an intravaginal ultrasound, all traces of the cyst were gone however i was still expereincing pain with sex. since being off the pill, all my previous symtoms returned. my ob/gyn told me the next step was to do a laparoscopy to rule out any signs of endometriosis.

two weeks later, i was laying in the hospital waiting to be taken into the operating room so we could begin my laparoscopy. my ob/gyn is also a surgeon that specializes in endometriosis patients and he was aware of my concerns, so this was a little enlightening. however, i let my anxiety get the best of me. would this help diminish my pain long-term? would i ever be able to have children? my mind was racing. my doctor assured me this would improve my symptoms & increase my fertility.

the operation took a total of 30 minutes and i was lucky enough to have caught it at an early stage. it was a mild case & i was back to work in four days. i had a speedy recovery and was excited to begin my new, pain-free lifestyle. my doctor prescribed me lo loestrin to help control my pain & lighten my heavy periods (the paragard caused me to have extremely heavy and painful cycles). i had my first period since my surgery on october 1st and it lasted until october 5th. i then began bleeding again on october 12th & it wasn't like a normal period, it was thick and dark like the blood i had after my surgery. it is now the 22nd and i have began spotting once AGAIN and am now due for my regular cycle in about four days. i have also been experiencing the same dull aching pain in my hips and lower back that i had before my surgery as well as some pain during sex. although it is not as bad of a pain as it was, it's still concerning to me since it's only been a month since my operation. i called my doctor and he said if the pain continues over the weekend to make an appointment. i do not know how long it takes for my body to heal from the surgery, especially since it was so deep in my abdominal cavity, and perhaps this is the reason i am in pain (ie: scar tissue, etc.) but i am horrified.

i was in high hopes i would not have to deal with this again for at least a year if not longer, but i am now worried the endo is back. i can't afford to take off work once a month for operations. this barely gives my body enough time to heal as it is. i have continued my research & found that pregnancy helps shrink the endo and although my boyfriend and i are in a serious, commited relationship, i don't think right now is a good time to have a baby. he has been having a hard time finding a stable, full-time job (he's been working a lot of seasonal jobs) and i am not making much $ so this seems out of reach at this time. i am at a loss for words. it seems the only way to help me is to continue to have frequent surgeries or start a family & i am not prepared for either.

this has taken a serious tole on my relationship as well as my career. i want to go back to school but fear having to take a lot of time off for my disease. i am young and want to live a healthy, happy life but am having a hard time doing so while in pain constantly. i am sooo scared i will not be able to have children one day. i feel as if it's now or never but i don't want to bring a child into a world where i cannot provide for him or her the way i would like to. i feel lost & confused . . . what to do?

**heryseshta** · 11-06-2011 10:50 PM

I also have endo, I was diagnosed at 19. I had been having horribly painful periods since I was 12, and started birth control at about 13. I have had 2 laparoscopies and scrapings, 1 round of lupron and I am now recovering from my hysterectomy.
Personally I think it would be wrong to have a child to try and cure endo, and I was also faced with that option. Maybe talk to your doctor about something called lupron. What it does is basically puts your body into menopause for 6 months. Apparently if you are the type of woman that could be cured from pregnancy then lupron will do the same thing. You can still get pregnant in the future. Although the treatment is unpleasant. I had migraines and extreme mood swings with hot flashes. But I don't regret doing it.
As for your surgery, I am curious how the dr got away with not telling you that you needed 2 weeks before lifting or engaging in any sexual activity. I would highly recommend talking to a different gyno if they didn't discuss that with you.
Pelvic physical therapy can also be a useful tool for women with endo, apparently it can help them regain their sexual health. I know how badly endo can effect a woman's sex life. I ended up not being able to have sex or an orgasm without extreme pain.
As for fertility, yes endo can effect fertility... But not always. You might not be effected at all. Or you might end up needing invitro. Because of your age I know that no doctor is just going to tell you that you should get a hysterectomy. Especially since you want kids some day. So find a good doctor that is willing to work with you!
I am thinking that you might want to look into Dr Redwine in Oregon, he is supposed to be the best dr in the states when it comes to endo. There is supposed to be another in the southern USA, maybe Mississippi? Not sure about him though. Whatever you do, don't give up! There are also online support groups for endo, look into it. They helped me quite a bit

**leahbia_83008** · 11-07-2011 06:00 PM

thank you heryseshta for your post. i did, however want to clear a few things up . . . my doctor did in fact tell me i was not to engage in sexual activity for two weeks, which i followed, but soon after that two week period was up i had sex with my boyfriend with little to no pain up until the past week or so. he is a specialist in this area as well as a surgeon & he has helped many women like myself that i know personally or are a friend of a friend, so i am not concerned about finding another gyno — i trust mine whole heartedly. also, i'm sorry if it may have sounded like i feel having a child will cure my endo. i, in no way, shape or form, would self - diagnose to that extent & although it may help some women, i realize everyone is different and it may not be the "magical cure" to my problems . . . i only wish to have a child sooner than i had planned in my life to ensure i am able to have a baby of my own before the endo really takes it's tole on my body. if my boyfriend and i did decide to try to concieve, it would not be for another year (or even longer!) considering we are not in a good financial state and would need time to prepare for something as important as a child's life.

as far as the lupron treatments are concerned . . . i have done some research in this area & the idea horrifies me. i do not do well with artificial hormones and knowing i would be stuck with this drug in my body for 6 months does not sound appealing. i am not in a position that i could call off of work frequently if i am not feeling well (i am a manager at a restraunt), i also suffer from major depression and acute anxiety, so i'm not sure if this would be a risk i am willing to take. i have been looking around for other natural remedies to help me deal with my pain and like you mentioned, physical therapy was one of them. i also found that chiropractic therapy as well as acupuncture helped some women. i plan on discussing this with my doctor when i visit him this friday (11/11). i will keep you updated with what my ob/gyn has to say when i have my appointment.

thank you again for you post, i find it helpful to hear other women's personal experiences with endo to help make a choice that is right for me. if there is anything else you would like to add, feel free

**stariana** · 11-08-2011 07:47 AM

Hiya sweetie - I am 45 now, but at your age I battled endo . . . i won't lie, it was horrible. I also had two laparoscopies, so I've been where you're at. One thing I wanted to say on your post was I don't think you realize you had major surgery, and your body is no where closed to being completely healed. It will take at least 6 months to a year to heal, and your cycle will NEVER go "back" to its regular schedule. The endo quite possibly will come back, but I would think it would be gradual, over a period of time. Not a month. I think what you are feeling is the tissue still healing inside. I will say this, stress makes endo worse. Find a way to de-stress, while taking very good care of your body. Yoga is wonderful. : ) Breathe, heal, and read all you can on this. It is a battle. Stay strong.

**leahbia_83008** · 11-08-2011 05:24 PM

thank you so much stariana for your post. i am really trying to stay calm & stay positive, but this pain is a constant reminder that it is still there. it did cross my mind that it's possible i am developing scar tissue & that may be why i'm feeling the way i do however this scares me too bc i've heard scar tissue from laparoscopy can cause infertility in some women and i desperately hope to have children of my own some day. you mentioned you are 45 . . . have you had kids of your own? if so, were you able to concieve naturally & how long did it take for you to get pregnant? were all or any of them healthy and successful? if all goes well and my doctor is certain the endo has not returned, i plan on speaking to him about natural, alternative remedies to help with the pain. i cannot stand feeling the way i do every day, it truly effects my quality of life.

**stariana** · 11-10-2011 08:52 AM

You are so welcome dear. Yes, I had the scar tissue issue (now that just sounds funny!) : ) My story is a long one, and it was a battle, so I won't bore you with the gory details, but I will tell you this ~ I had NO trouble conceiving, and am the very proud mom of two teenage boys – healthy, strong, aggravating teenagers! Concentrate on healing your body as best you can and give yourself time to take care of one thing at a time.