Well, the pain is back but it is different. It hasn't been as severe for the past 2-3 weeks. I am on my cycle right now and it isn' horrible. I do keep having the shooting pains through my cervix. Darn this endo. It just isn't predictable. I am scheduled for Laproscopy in August. They keep asking if I want a hysterectomy and I am like, no, I am only 23 and I want to have kids. Ugh! That is not the only way to treat endo, the others just help and don't make it go away but even a hysterectomy isn't a cure all for it. Why does the pain become so bad at times and then slack off once I have scheduled surgery. I just don't understand how the pain became so bearable. I guess my ability to tolerate pain has grown. OH well, just wanted to give an update.
Hi how long have you had endo? What kind of treatments have you been on for it? I was just diagnosed with Endo on Monday. I am currently in the process of recovering from my lap performed on Monday. It has been a lot rougher than I expected it to be. I usually just bounce right back after surgery and illness. Not the case this time around. I understand your not wanting a hysterectomy, you are way too young! I also read that a hysterectomy doesn't cure it either. Anyway I wish you luck with your lap in August. Marlyss
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I was diagnosed with endo 3 years ago by lap. This will be my second. The pain has been unbearable lately-but this month it is different. I had the spots cauterized last time then did the lupron shots. Can't do the hormones again b/c they caused other problems. I hope you feel better soon and that you get the best treatment possible. What did the doctor say they were going to do? Are they going to put you on hormone treatment? When I did that I was in a fake menopause. not fun. I did the birth control but that didn't really help. I don't understand how bcps with estrogen help the endo b/c the estrogen is what makes it grow. Ugh! Thanks for the good luck. I am ready to find out what is going on inside my body and hopefully nothing is damaged really badly. That is my biggest fear, that my tubes will be shot or something like that.
I originally went to my gyno for problems with bleeding...it was like 3 weeks out of the month and they had become very painful lately. He put me on bcp Yasmin and that stopped the bleeding. I have only been on Yasmin for 5 weeks. I started my first period on Yasmin last Monday and my cramps were so bad I was in tears. I also was hoping for a PCOs diagnosis, he ran a ton of tests and everything has come back normal so far. We are still waiting on the DHEA and progesterone tests. Anyway he did the lap on Monday. After surgery he told my Mom that I had a ton of scar tissue on both of my ovaries and my tubes. He told her that he cut most of that out. He told her that I do have endometriosis and that it is going to cause me alot of pain for the rest of my life! He told her we would treat it medically and go from there to plan b, and c etc. I have an appointment with him Next Tuesday. I guess I will find out his plans for me then! I have tried doing a search on the internet for endometriosis and all of the sites basically say the same thing. I will be more than happy to let you know what happens at my Dr.s appointment next week. Anyway thanks for your input! Marlyss
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The hormone treatments I was on after the surgery help to prolong the endo coming back so quickly. There are a lot of side effects and risks with them. I developed a false tumor around my optical nerves due to weight gain. There were some other meds I was on also but the weight gain was from the hormones. But the treatment did help me tremendously. Research the Lupron and hormone treatments and if he doesn't bring them up then if you are interested you should. The birth control did not help me with the endo. I have heavy periods, but since Ihave been off the bcps then they have changed. I am not passing as much(sorry, tmi) so I think it must be inside me still. I don't know what is going on. Good luck with the rest of your test results.
I definitely do not need to gain any more weight!! I weigh enough! I have heavy periods as well, and I always go through my clothes. I guess I have just been lucky with the Yasmin so far!
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Hope you are still feeling okay today. I know how you feel about the weight gain if you did go on Lupron. I felt the same way and the doctor kept saying it was no big deal. Not everyone gains weight on them though. Let me know how you are.
Hey just wanted to post an update. I had a lot of infection in my navel due to my laparoscopy on Jun 13th so I had to have another follow-up visit today. My gyn told me I had a severe case of endo so he is going to start me off on the Lupron injections for 3 months and see how that works. I have to wait on approval from my insurance company before begin. I am going to look Lupron up and see what side effects etc. I have to look forward too!
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HI! so sorry about the infection. The best thing to do is research the lupron. I didn't when I started, I just took the doctor at his word. Some people are lucky and don't experience many of the side effects. Hopefully that will be you. I have had some more stuff start going wrong with me last week, and I am missing work again today and missed half a day yesterday. I am a bum and I feel as if my boss is going to get tired of this. Some days I am too exhausted to move. I am going to my general practioner next week to see if there are some other things going on besides the endo b/c my ob clinic here will not help me out any. I am glad that you finally know what is going on and good luck with the treatment. Keep me posted.
i am in the same boat. i had endo burnt off in january and a mirena coil fitted but i have been v unwell the past couple of wks and generally unwell for about 3 to 4 mths i think mine is back too even though i always thought it took about 2 yrs to grow back but there is no mistaking the abdominal pain, back pain leg pain, swelling, nausia, bladder problems (i am in the toilet every hour and sometimes every hour) bowel problems, and shooting pains up through back passage and vagina, and of course overwhelming fatigue so i am in no doubt i have an app with the gyny nxt wk and will have a scan but i know the outcome
the endo experience is not one that u confuse u know
i would say to you to ask about the mirena coil it could v well do u some good and say no to a hysterectomy and if they insist go for a second opinion
i have tried drug treatments for endo but each as ghastly as the last the worst for me was definately danazol, then depro vera, then decapeptyl plus numerous types of pill
the good thing about mirena it stops heavy bleeding firstly, and because the progesterone amts released is so minute that the side effects are minimal and usually disappear within a few mths i do know other women who have it for endo and are v pleased with it
mind yourself
Hi! What is a myrena coil? I am so sorry that yours is coming back. My first surgery it started coming back very soon but I did not know until I went off Lupron and then pain started again. I do not know if the fatigue is the endo, probably so, but I need a doctor that will work with me. Right now I go to a clinic and they aren't very helpful. I do not even know the doctor that is doing my surgery, but I am going to request to meet him at my appt. two weeks before surgery b/c I have so many questions for him. Let me know what your doctor says.
Hey Leah I am soo sorry you are haivng so much pain! I ended up having to miss 2 weeks for my lap due to the infection and missed half a day yesterday. Let me just say my job is not too happy with me right now. My Af is due next week and i am so scared that the pain is going to be bad like last month. If it is there is no way I can go to work for the first 3 days. Hopefully the gyn got most of it and it won't be so bad.
I will keep you in my prayers, i hope you get better soon. You have been very helpful to me! Keep in touch and let me know how you are doing. Maybe we can help each other find something that will help us both! Good luck with your surgery and your Drs. visit!
Did u get the lupron injections done at your dr's office or at the hospital?
Are they expensive?
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I am curious about the myrena coil as well. I have never heard of it. I guess I will have to research it.
Anyway I hope that you get better soon! I honestly don't want a hysterectomy, but since I have had 3 kids, if it becomes necessary i will consider it. I can't imagine having to go through the pain of endo for the next 20- 30 years.
Did either of you have a tubal ligation? I did and I noticed about 3 months later I started having to shave my chin, and most of the other Pcos symptoms. I am almost positive that it has caused my endo. I don't recommend having it done!
My thoughts and prayers are with you both! Get Better soon!
Marlyss
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Marylyss,
I got the Lupron injections at my doctor's office. They are very, very expensive, but insurance paid most of mine, and the doctors office worked with me and a payment schedule. I know exactly how you are feeling right now. I hope that your cycle will not be severe. I will keep you in my thoughts and prayers also. I am going to get my general practioner to run blood tests for me so that I can find out if I really have PCOS and metabolic syndrome. If I do, I should probably be on some meds. Are you tired all the time? I don't know if that is part of the endo for me or not. I have not had tubal ligation. I don't know what all is going to be recommended for me after my surgery. I will keep in touch with you. Feel free to private message me anytime.
Leah, yes I am exhausted all of the time! I have a book on endometriosis and it says that the endo does cause you to be tired all of the time and it also causes Chronic Fatigue Syndrome! I haven't been diagnosed with Pcos yet either, my doc hasn't a clue as to what Pcos is. He had the nerve to tell me that some women are just naturally hairy and there was nothing he could do about it. I am going to make me an appointment to see a Dr that specializes in Pcos as soon as I can take some time off of work. My doctor did do a ton of bw on me and everything has been normal. We are still waiting for my progesterone and Dhea test back. A few years ago my testosterone level was at 194, I didn't have insurance then so I never went to the endocrinologist for that, now it is normal and I am now hairier than ever. I also haven't been checked for IR, I am not diabetic. I still haven't heard from my Dr's office about the Lupron injections. I had no idea they would be so expensive. I hope my insurance covers it!!!!!! I am not financially able to pay right now due to my recent time off of work. Good luck!
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well, its back, but different 
for 3 months and see how that works. I have to wait on approval from my insurance company before begin.
