[MaddieMay]

I hope this is the right forum, if not, please feel free to move it to the correct forum. I do know that this issue can relate to infertility, so that's why I posted it here. I'm new here, so I hope you all don't mind me starting off my introduction with some questions and a plea for advice.

I'm a healthy 25 year old, married, with no children. I've been on OrthoTricyclen for about 4-5 years. To make a long story short, I've recently been having problems that lead my doctor to believe I *may* have endometriosis. I've had an ultrasound and a CAT scan (because at one point they thought it was cysts or my appendix) and EVERYTHING, including blood work, came back normal.

I have many symptoms of endometriosis. My doctor suggested doing a laparoscopy to be sure. He is completely supportive of whatever I choose to do-whether I do the laparoscopy or not. I am not exactly excited about doing it, but in a way, I just need to know. If it is endometriosis, I will NOT be taking any sort of drugs or hormones. Instead, I'd probably be trying some natural/homeopathic/dietary options. But then again, it would also be good to know that I didn't have endometriosis. My husband and I do want to have children in the near future, but we feel uncomfortable proceeding without know what is going on.

Has anyone been through the laparoscopy before? I have had surgery before and recovered from the anesthesia just fine. However, I feel like I'm playing the lottery-I might wind up with an official diagnosis, I might not. My insurance will cover it 100%, so money isn't an issue. It is frustrating because I can not figure out what is wrong with my body and I'm usually so in tune with it. I hate the fact that I've already gone through so many tests and it's resulted in nothing, so I hate to go through yet another procedure. So, I thought I'd come pick the brains of other natural-minded people and see what your thoughts/advice were. Thanks in advance for your help!

 

[wonderwahine]

I got diagnosed with endo by my doc at 17, after suffering from the first ever period I had. They never did a laparoscapy with me, I fit all the classic symptoms, had 3 "PID's" all without any labwork to back them up. We treated the pain only, he offered hormonal, but I wasnt sexually active at the time (or ever had been) and the hormones seemed to make it worse. I went on the depo (1 shot cycle) just before I got married, Had the worst cramps, breakthrough bleeding, terrible mood swings and depression. So we went off it, which was good anyway, since we decided to ttc early because of the endo. Thankfully after my af returned (in 3mths) it only took 9mths of ttc and we conceived, I did do ovulation predictor kits and looked for changes in my cervical mucous. After ds, because my choices in birth control seemed so limited (because of the endo and allergies) I went on the depo for 2 cycles.....I hated it, and had horrible mood swings, no breakthrough bleeding or cramps this time, but I also haven't had a return of af. I've been off it for 4mths now, and I still haven't had af, but I'm also bf. I'm hoping I wont have to much pain after it comes back though.

 

[Jenny1231]

Hi Nicole. I have Stage IV endo and was diagnosed last Nov. at the age of 30. I always thought the pain and symptoms I had were normal until I started bleeding from jogging. I went to a new obgyn and he told me I showed classic signs of endo. The 1st thing he did was send me for a CA125 blood test which tests for cancer. He said if there were slightly elevated levels it was a good sign of endo. Then I went for two u/s. I guess it was almost obvious that i had endo because I had cysts (endometriomas, about 4 fingers wide) on each of my ovaries. When they did the lap it was also on my bladder and my ovary was attached to my pelvic wall.

Now, since the surgery in Mar. my cycle has been abnormal. We've been TTC for about a year and I just started my first IVF cycle. If I could change anything, I wouldn't have waited to have children. IMO you should get the lap to find out if it is endo. You don't want it to get out of control. Then when it comes time for you to start trying you'll be all set! My RE has been awesome and I've been under his care since Feb. He advised that I start agressive fertility treatment a.s.a.p. b/c the endo can damage your rep. organs. We know that my tubes are open but there is no way to be sure that they are functioning. That's why we stared the IVF. Just a few more weeks....I'm praying!

Good luck to you and keep me posted on how things are going. And feel free to ask as many questions as you want.

 

[MaddieMay]

Thanks for the replies! It's nice to hear from others who have been there. My doctor says I have all the classic signs for endometriosis, but I guess my biggest fear is that they will do the laparoscopy and find nothing. Then I'll be back at square one.

Jenny-I didn't know there were different stages. I haven't done a ton of research yet, so I'll put that on my list for this weekend. I want to arm myself with as much information as possible so I'm not stuck making any quick decisions if it does turn out to be endometriosis. My husband and I have decided that we will start TTC right away if we get to the bottom of this. We haven't been in any rush up until now, but that's more our personalities than anything else. If it winds up being severe, I may look into my options a little further. We're very open to adoption as well, but a part of me wants to experience pregnancy too. Maybe we'll do both.

When you had the laparoscopy did they put you completely under? My doctor said they would, but I've also read that you can be awake for it. (Maybe they do an epidural? I hate that idea!) How was your recovery? I've been put under three times before (twice when I was really young and once for my wisdom teeth around 18). Did they do it through a mask or an IV? That's interesting that it caused your cycles to be off. As much as I really hate the idea of going through it, I can't be left wondering. I'll be scheduling the surgery on Monday (I missed the phone call from the nurse today), but hope to have it done asap. My husband may be leaving for awhile, so I'd like to do it while he's still here. Sorry about all the questions and good luck with the IVF!

 

[Jenny1231]

I was put completely under for the laporoscopy. As far as I knew you had to be. That was through and IV. The hysteroscopy is different. (I think) That can be done while in a "twilight sleep". The lap they make 3 tiny incisions and the recovery wasn't bad at all. No exercise for about 2 weeks and I was out of work for a week. I had a hard time coming out of anesthesia (I think the dr took longer than expected) but the rest of recovery wasn't bad. I had percocet but I don't think it ws too strong because it never knocked me out or anything. The pain waking up from the surgery was a little harsh but the nurses got rid of that in about 5 seconds. They must have pumped something good into my IV. I think the worst part was trying to get dressed to go home. I could barely move and it was weird to have to have help putting your own underwear on. I could barely hold my head up until I got home and ate something. That's when I started to feel better. So even though I didn't feel terrible the whole week, you still need to rest because you want to make sure you heal properly.

 

[MaddieMay]

If you are diagnosed with endometriosis, do they consider you high-risk if you do get pregnant? Or does it depend on the severity?

 

[wonderwahine]

depends on if you need/had surgery, or if you have fertility treatments.

 

[Jenny1231]

My doctor told me I was not at any higher risk. He did say if I got pg too soon after surgery that I was at a higher risk for an ectopic pregnancy.

 

[wonderwahine]

I think it also depends on where they have to get cysts off of.....if its your uterus, it could put you at high risk, but if it was your bladder or tubes then its not as high.

 

[MaddieMay]

So it could be either? I guess I was just wondering if it would be possible to do a home birth or birth center birth with endometriosis. (Yes, I know I'm a bit ahead of myself, but I am a planner like that!) I haven't actually read up on how endometriosis affects women during pregnancy and childbirth. There is so much information out there!

 

[wonderwahine]

it supresses endo, because your no longer ovulating etc........

I had no problems with my pregnancy or labor.....I didnt do a homebirth, but I wasnt high risk or have any complications, just a crappy deal with an OB and ins.

 

[AngAlthouse]

Well i was diagnosed with endo after a laporoscopy to remove a dermoid cyst and my right ovary. My doctor told me she was concerned that not only would i loose my left ovary due to endo or other cysts but i might be infertil because women with endo are more pron to intertility. I am now having injections of lupron depot to deminish the endo so me and my husband can undergo testing to find the issue.

 

[oregongirlie]

I had severe cramps with my periods and otherwise no symptoms explaining my infertility. So, before going to injectable ovulation induction yet after 6 IUIs (3 w/clomid, 3 w/o) and 21 cycles, it was time for the laparoscopy.

I was NOT happy about it but it went really, really well and now I'm pregnant!

You have to be put under with a breathing tube. They tilt the table down towards your head, fill your abdomen with CO2 and put instruments through your bellybutton and 1-3 very, very small incisions near your pubic line. I just needed one. I recovered for a few to several hours in the hospital (lots of throwing up from the anesthesia though). I only took the pain pills for a day and a half once I got home. They made me throw up too. Also, the pain just wasn't so bad. My bellybutton looked crazy for a long time afterward (bright purple and superglued). I was afraid it would forever be weird, but it went back to normal. I had stage 2. I'm sure that this was the cause of our infertility -- we conceived 4 months later. Now that I'm getting bigger my bellybutton is getting pushed out and you can see the scar, but I would have gone through the whole thing 5 times over to get where we are now. Maybe 20 times if I had to! It was totally worth it. Also, it wasn't as scary as I thought. Everyone in the hospital was especially understanding, nice and experienced. I shouldn't have worried about it as much as I did ahead of time. The Taking Charge of Your Fertility site has great stickys on their board about preparing for a Lap.

 

[Miguelsmomma]

Hi! This is so funny that this is the first thread for my first time coming here. I was looking for other women who have endo, too. I just wanted to let you know that I had the same concerns before my surgery: What if I go through surgery and it isn't endo? How bad will the surgery be, etc. From the minute my RE doc came in the room he said, I don't like to talk about surgery right off, but I think this is what you have. I had heard of endo, but didn't know too much about it.

My husband and I had been trying to have a baby for a year and a half, then finally got pregnant! only to lose it at six weeks

Then we tried for another year before going to an RE. I kept figuring it will happen when it happens.

I had my surgery a year ago in March. The pain wasn't bad. I didn't even feel the two incisions on my bikini line, but my belly button was sore for about four or five days, not too bad. My doc said I had stage IV. My appendix was pulled down and over and attached to my right ovary. Part of my bowel was attached to my left ovary. No wonder bowel movements really hurt, especially when on my period. But thankfully both tubes were clear. He said he couldn't even get to all of it and wanted to put me on Lupron afterwards, but between his office and the insurance, I never got on it.

Well, in March of this year, almost exactly a year after my surgery, I found out I was pregnant again. Take that, endo! This was the second time I had gotten pregnant on my own. I was so worried for this pregnancy, though, after losing the first one. A midwife told me that endo only affected getting pregnant but not the pregnancy itself. That was a big relief. Everything was going really good, and I had a really good midwife. We were so excited. I wasn't considered high risk or anything.

On July 16th, 2006, at 18 weeks pregnant, I found out my son had died. I had to go in to get induced. On July 18th, after 10 hours of labor, I delivered my beautiful boy who we named Miguel after the Archangel Michael. All of my blood work came back normal, and they don't have a reason why he died. They tell me that endo isn't the reason for my miscarriages, which is good.

A couple weeks after delivery I went back to my RE doc about finally getting on the Lupron. After fighting, again, with his office and the insurance, it looks like I am finally going to be able to get on it. I only want to do it for the three months and get on a diet for endo to help me with the rest. I just ordered a book called a key to healing through nutrition by Dian Shepperson Mills. I can't wait for it to get here.

I am just so sick of endo. The more I read about it, the more I just want to be rid of it forever so that I can be like other women who, when they decide to get pregnant, can just get pregnant without jumping through hoops and going through so much heartache.

If I have any advice, it would be do anything you can to get rid of it and start trying to have a baby as soon as possible, because the sooner the better for your endo. My husband and I are open to adoption, too, but I have hope of one day getting pregnant and delivering a healthy, happy full-term baby.

 

[MaddieMay]

Thanks everyone-I really appreciate all the advice. One more week until my laparoscopy.

I am so nervous about it-what they will/won't find, the recovery, etc. I only took 4 days off work too, but I work part time, so hopefully I'll be okay. My doctor didn't seem to think it was a big deal, but I read the TCOYF site and people there were off for a week or two. That site has a ton of good advice, though, so thank you for that suggestion, oregongirlie! I'm going to try and get everything ready this weekend and the beginning of next week so I can rest entirely those 4 days. I'll definitely be cleaning this weekend-my husband and I have different ideas on what constitutes "clean."

Miguelsmomma-let me know how the book is. If it turns out I have endo, I'm really going to start looking in to alternatives. Luckily, my MIL is really knowledgeable about alternative medicine, so I'm sure she'll give me advice (if I ask for it).