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endo advice for newcomer???
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endo advice for newcomer???

Hi everyone, I am new and was hoping for some advice.

I am 25 years old, newly married, and have no children. My appendix and an ovarian cyst ruptured so I had an appendectomy about 4 years ago, I have consistently dealt with painful periods and ovarian cysts over the past 5 or 6 years, so my gyno suggested Implanon birth control needle to decrease ovulation and hopefully prevent cysts, it didn't really work I guess because I still get them just as much), so about 3 months ago when my right pelvic area starting hurting..I just figured it was a cyst like usual. I put off seeing my gyno for a couple weeks hoping the pain would subside as it usually does. So a month goes by and the pain is gradually getting worse (no period during this time). My typical routine is to go see my gyno when an assumed cyst hasn't gone away for about a month. I saw my gyno and he did a TV ultrasound. It was very painful when the nurse moved it to the sides near my ovaries. My gyno called me with results saying there were several matured follicles but no cysts on my right ovary, and there is a 3cm cyst on my LEFT ovary (i've been feeling no pain from this). I was disheartened to not know what was causing my pain. About 3 years ago a different gynocologist out of state where I was living at the time, told me I needed to be checked for endo but I didn't really know what she was talking about so I put it off. Now I am concerned that i've been dismissing endo pain as ovarian cysts for potentially years. The pain is still gradually getting worse...i'm a student and this past week it was so bad that I missed 4 days of school, and was stuck at home because it hurts too bad to move. I get no relief from a heating pad, or the 3x daily anaprox550mg that my gyno gave me. I am confused, angry, depressed, tired.
I've been sleeping maybe 3 or 4 hours a night if lucky. I've had no appetite from the soreness and pain in my stomach and the pain i'm having stretches from my right ovary up over my hip bone. Sometimes the pain feels like it is pulsing around my reproductive organs. I have trouble picking things up and bending over. After a month of bad pain my period finally came and and it was extremely painful, but honestly not much more painful than when i've been off my period. Contrary to typical symptoms (I read usually the pain gets worse around the period but subsides afterwards) my pain didn't get any better getting off my period so that worries me as well...

I have laparoscopy in a couple weeks, and can hardly wait. Does the amount of pain have to do with the stage of endo? I'm wondering if the horrible pain i'm having could be coming from scar tissue since i have such an extensive history of ovarian cysts and ruptures in my reproductive area?? Like I said before I have no children, and am concerned about infertility as well as needing to try to conceive right after surgery if that were the case ( I know some women who have had to try immediately after scar tissue removal....is this common????).... I feel lost. I have no female friends really and my family is not a good support system....if there is anyone out there who has advice or support or can maybe tell me what I should be expecting to some extent with my given symptoms I would really appreciate it. I love my husband so much and will be crushed if we can't conceive. Also I would hate to have to rush into pregnancy before we as newlyweds are ready (weve been together 7 years but the right timing has always been very important to us)..... Thank you for taking the time to read this....any help or discussion would be gladly welcome!!

- Bekah


4 Comments Post a Comment
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136956_tn?1363091289
Welcome to the Endometriosis Forum. I will help you out the best I can with my personal experience and my research.

First I want to say I did the same thing when I was 14 about the Endo. I dismissed it because no one further mentioned it to me and what it really was, that lead me being misdiagnosed for 14 yrs. UGH!

First answer to your questions is no there is no way to gage stage with pain as some people can have stage I and be in severe pain and some people with Stage IV and have none. Everyone is different. I had Stage IV and everything was involved. Ended up with Frozen pelvis due to all the Endo and adhesions. It was deep infiltrating endo and I can only assume it got that bad because it took so long to diagnose. Nothing on ultrasounds came up ever and if it wasn't for that Endometrioma that grew when I was 26 I don't think that I would be diagnosed to this day.

When it comes to fertility and Endo there is no right answer because no matter what stage you have you can run into complications. I was Stage IV and conceived. People usually are told to start right away before the Endo or adhesions grow back yes that is normal. Are you seeing a fertility Endo specialist?

You are right that a lot of pain could be coming from scar tissue from a previous surgery. I had surgery when I was 7 for an Appendectomy as well as bowel surgery and the scar tissue 20 yrs later was so bad it went all the way up under my rib cage. There was a lot of it and they took a long time removing it all.

You are doing the right thing when it comes to getting this looked at and the surgery recovery will depend on what they find. I have had two surgeries. the first one was intense because they had to cut out lots and lots of endo and it was deep. I had rectovaginal Endometriosis as well so it was a 5 hour long surgery, and after surgery I couldn't pee due to the work done on the bladder and the ureters. It took 2 weeks to go back to work and about another 2 to heal enough to walk around and do what I would normally do.

the second surgery I felt great not as much pain at all. I was anticipating the same as I had before but I felt good after 3 days and was back to work in a week.

Make sure you find out if the surgeon EXCISES the endo that is the most important of all. Lasering it out does not get to the root of the endo and will grow back and if they don't get it all the it will continue to spread and you will be on a long road to many surgeries.

Let me know if you have any other questions. :)
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Avatar_m_tn
Thank you for the responses to my questions! I think he an endo specialist I'm seeing. He's my regular gyno and he will be doing my laparoscopy himself. I feel like I've underexaggerated my pain to him until very recently, I'm not sure if he plans on excising or lasering. I will ask him in my pre admissions appt Thursday. He did tell me he's going to remove endo if found. My husband will be my health care proxy. Do you have any advice on what to tell my husband regarding decisions made while I'm under anesthesia?
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136956_tn?1363091289
Well there shouldn't be any decisions made unless they run into some serious complications and that is unlikely. Anything that you have questions for need to be answered at the pre-op like;

At what point would you move from a lapro to laparotomy during a surgery?

Can you remove cysts from the ovaries without having to remove them?

What is your plan if you feel you need to take anything? Will you close me up without removing my tubes, ovaries etc then discuss further at my follow up appointment?

What needs to be brought up is your need and wants to have children. That way they will be less likely to remove anything.

A good surgeon will be able to remove all Endo and save organs.
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Avatar_f_tn
Hi Bekah,

I just had laparoscopic surgery a week ago and had endometriosis cauterized on the left and right side. I had pain in my groin, pelvic area, lower abdominal, lower back, and chronic fatigue. It started w pain just on the left but gradually radiated to the right as well. I couldn't bend over and was practically laying jn an upright chair.

I am 26 and also worried about being able to have children. I hear of many women being able to conceive and have heard of women that have treated endometriosis and have no pain.

I too was very tired, depressed, and felt hopeless because CT scans and ultrasounds did not reveal anything despite my constant pain. I had to push an OBGYN to finally perform the surgery. My pain was pretty bad but the surgeon said people in a lot of pain don't usually have a lot of endometriosis. I have my post op w him tomorrow because I am having a sharp pain in my right side that comes and goes and left back pain still.


Make sure your husband gets you a lot of soft foods or cold things like Popsicles and cough drops because they do stick a breathing tube down your throat and your throat will be sore for a couple days. It also did hurt to go to the bathroom for the first two days. I took a week off work.

If you have any questions feel free to ask me :)
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