Endometriosis, Need Help Deciding...

Updated on January 13, 2009
J.R. asks from Effingham, IL
11 answers

I'm going to try to explain my situation without writing a novel. First off, my mom, grandma (mom's mom) and aunt (grandma's sister) all had endometriosis.

I have always had long heavy painful periods. I was on the pill for a while (pre kids) but in the past 6 yrs I've only had a few periods becauase I've been pregnant or nursing so didn't gat any periods. Now I'm having lots of issues again. Here are my symptoms...

Very heavy bleeding during periods
Usually lots of clots during periods
Lots of cramping and vaginal pressure/pain during periods
Bladder pain and frequent trips to bathroom between periods
Pain while using bathroom during periods
Nasea (not sure this has anything to do with it) almost every evening

I really think I have it. I am not on the pill because of breastfeeding my baby, which my doctor suggested I start taking. I saw him a few months ago and he wsa no help....after telling him I didn't want to be on the pill he said "well if you're not willing to help yourself I can't do anything for you".

My question...my husband and I still want to have 1 more baby, we're planning that next year though. I've read that endometriosis can be linked with ovarian cancer so I don't really want to mess around with it. If I do decide to get a Laproscopy to find out when would be best to do that? Can anyone help me make this decision? Anyone know the pros and cons of it? Side effects? Can it affect future pregnancies? We have 4 boys right now and I'm wanting to try just once more for that girl so I don't want any of this to affect that. Thanks so much!

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answers from Chicago on

I would get a second opinion as well and see what that doctor recommends since you want to have at least one more child.

Good luck and I hope everything works out.

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answers from Chicago on

First of all congrats on being a mommy and wanting to help yourself. You must change doctors - with a comment like that, then he really isn't compassionate at all. With your symptoms, I know of a great natural progesterone cream that would help you tremendously! So many thousands of women have been helped by it. I can provide you information, testimonials, etc. about how it will help almost all of your symptoms. There is a lot of information on the web and Dr. John Lee was a pioneer at helping women with hormonal imbalance. Check out his site at www.johnleemd.com and see what he has to say. I'd love to share with you what has helped so many women and get them back to normal. You should be having so many difficulties like this and truly, most OB's aren't familiar with hormone balancing as they don't teach it in med school. Shameful, right? I hope to hear from you. Here's to your health!


1 mom found this helpful


answers from Chicago on

I would think after having your other children your doctor would know if you have any uterine fibroids after doing ultrasounds with your other pregnancies. I have a few of them and have a lot of the same symptoms you mentioned. Just a suggestion to make sure as these may be causing your problems too, however looks like you need to find a new doctor, I can recommend a good practice if you would like.



answers from Chicago on

Well, definitely get a second opinion but do remember that without a period your uterus does not shed its lining. Not that it keeps growing out of control, but with your family history of endometriosis it is definitely something you should consider. Although menstrual periods are an annoyance, they are a natural and healthy way to shed and refresh the lining of the uterus. Heavy bleeding and lots of clots indicate there is probably a thick lining and a lot of tissue/material is being shed during the period. The pain and cramping are mini-contractions (similar to birth) designed to help the lining of the uterus detach.

Take into consideration your future wishes and current situation. Define for yourself what is the most important thing for you (breastfeeding you baby and not going on the pill? preserving the health of your uterus in order to try to have that elusive girl child? taking a chance that the endometriosis could become a serious problem?) Like I said earlier, get a second opinion but don't be surprised if you have to make some sort of compromise on your part to attain your ultimate goal. Good luck to you!



answers from Chicago on

Okay I'm going to try to tell my story without writing a novel.

You don't mention any other symptoms outside of your period other than having to urinate alot between periods. I think if you had endo you would also experience pain during sexual intercourse and possibly during strenuous activity. It may be very minor at this point and then get worse later. Or you may not have endo but just painful periods....my mother always did and she doesn't have endo...she would have to stay home from school when she was young because it would make her so sick.

At any rate, I started having pain during intercourse when I was about 25 or so. I also had pain sometimes when I worked as a waitress when I would carry a tray over my head or walk too much during the course of a day.

I didn't have much bleeding because I had been on the pill since I was 17 and my periods were almost non-existent.

At any rate, the doctor went in to do some exploratory surgery and found the endo and thus cleaned up as much as he could.

He put me on the pill for three months at a shot. He said that if I didn't have a period as often I would get better.....I swear it made it worse. I hurt more after that year on that regimen than before.

Finally at 33 or so I went off the pill and got an IUD instead. I had been on the pill for so long I felt it was hurting my health.

Anyway, as soon as I went off the pill my periods got super heavy...I went from three days of nearly nothing to five to seven days with a heavy flow for two or three of those. It was so heavy that I would mess up clothes frequently. I just wasn't prepared for all that. Mind you I had been on the pill from the age of 17 until I was 33 or so.

I did notice something right off the bat. My pain started to subside. After a few heavy periods I started to feel much better. I could actually be intimate with my husband from time to time without any pain. I stopped experiencing pain during exercise. I could twist or bend with no pain.

We decided to start a family soon after and I got pregnant and had my first child at 35. I nursed her for a year and then got pregnant a few months after that. I had my second child at 37 and nursed her for a year. I had two pregnancies between her and my third child whom I had at 40. I'm still nursing him and he's 8 months.

For about ten months after each child I did NOT have a period at all.

So to summerize this novel. I very rarely have endo pain anymore if at all.

I honestly believe with all my heart that doctors have it all wrong. I think being on the pill for all those years created a back flow because I wasn't bleeding normally and that is what caused the endo....thus when they put me on the pill for three month stints that just made it worse.

When I let my body do it's thing naturally and even put my body through several pregnancies that is when I started to experience relief.

Take all that for what you will. But I think the pill is what causes much of the endo we see today.



answers from Chicago on

I had a terrible few years trying to figure out what was going on with my body. The last idiot doc, who eventually HEARD me, said, "Oh, maybe you have endometriosis." She promptly sent me to a fertility doc. While on the phone w/ the fertility clinic, I explained that I think I have endometriosis, would like to get a work-up, blah blah blah. The clinic lady told me that I have to get endo treated before I could come in. Tears, tears, frustration, more tears... then she told me to go to this new doc. She said that this doc is the best one for treating endo. I have had an excellent experience with this doc and another in her practice. I will gladly pass along the names. You deserve to have a doctor in your corner.

I applaud you for educating yourself and taking action before endo takes a death grip to your organs. Here are some things to think about:
Did any of your past doc visits include a blood test to measure your hormone levels? Did you have any delays (6 months+) getting pregnant before this? Are your current symptoms different than they were before childbearing?

I agree with a previous post that it's early to decide on the laparoscopy. You don't know if endo is interfering with your ability to get pregnant, so why put your body through it. You will have time later to go that invasive route, and the recuperation is quick. Also, if you do have trouble getting pregnant, there are so many other ways to help it along without having to treat the endo. Your doc should explain the effects of hormone treatment on endo growth. Docs usually wait a year of no pregnancy to start any fertility treatment, although this is shortened to 6 months for older women. Perhaps you will NEVER have to worry about this, but I suppose it's better to know going into your plans than not.

Please feel free to message me with more detailed questions. I certainly don't want to post all kinds of gory details right here! =) I wish you the best!



answers from Chicago on

Let me start by saying that I agree with the others - you need to find a new OB/GYN - I have a great one if you'd like the practice's name.
I had ALL those symptoms as well, but I only had an aunt who had it and a great-grandmother who got ovarian cancer and died from it...I still opted for the laparoscopy (lp) 4 years ago and am glad I did! I found out that I had congestion of the pelvis (very thick veins down there) so they cauterized the sides of some of them to make them smaller...they took pics of my uterus, tubes, and ovaries and showed me how healthy they were...I did conceive later one, to miscarry (not because of the surgery, because I don't ovulate on my own)...so pregnancy is still possible afterwards. It took about a week to recover fully from though - they go in through your belly button and then depending on what's going on will make 2 - 3 more small incisions...since they cut through stomch muscles, it hurt to cough, sneeze, and laugh...and you can't lift anything too heavy so that you don't pop stitches. If you're very worried you have it because family has had it too...see a new doctor and share your concerns with them. They should start by doing some ultrasounds and blood work and then move to the lp if necessary. You're right, ovarian cancer is linked to it, so yes, if you have it, you want to treat it before it gets too bad...also if you're still wanting another, you want to treat it before it scars your uterus too much to be able to have children. Just be prepared and see a new doctor!!



answers from Chicago on

First off, definitely find a new doctor or midwife. I can't believe an adult who is being paid by you to provide a service would say that to you. Get a second opinion. There are other options besides birth control pills.

I had a laparoscopy last December for suspected infertility problems. I got pregnant 3 weeks later and had a lovely homebirth this past September with no issues at all. I think the question to ask yourself at this point is what will you do with the info you get from the surgery? If you want to have another baby you will probably not be open to hormonal or surgical options so there may be little value-- it just depends on you. Good luck with your decision.



answers from Chicago on

First off, I would probably get a second opinion too. Also, I would have an ultrasound done to rule out any fibroids, ovarian cysts, etc..... Some of those things can cause your symptoms too. Was it easy to get pregnant with all four of your children?

You will be able to make more of an educated decision. I understand that your Dr. may know you well and know your history but he may not be offering you all the latest advise on what you can do in a situation like yours. And...whether you have another child or this is your last, you want to continue to maintain your health for you and your family - even if you are possibly destined to have 5 boys!

Best of luck to you in 2009! Sounds like you have it all!



answers from Chicago on

I am going to get on the 2nd opinion bandwagon.

I will also agree with the mom whotold you about John Lee. I actually have his book "What Your Doctor May Not Tell You about Pre-Menopause" sitting right here on my desk.

I was diagnosed with endometriosis about 7 years ago. I had an AWFUL doctor who did a butcher job of a laproscopy and punctured my bowel in the process. I was told that there was very little they could do for me. I was newly married and we were ready to start a family. I was told that I would have a very difficult time getting pregnant.

I lost a lot of faith in the medical field and went to look for some alternative treatments. (A lot of which I found in John Lee's book).

I can share more if you are interested, but definitely look into alternative treatments. The pill will bring on all sorts of other issues.




answers from Chicago on

The doctors that say things like that are very unprofessional and women shouldn't have to put up with it. Or men either now that I think about it. So first change doctors if possible.
My sister had endometriosis and just went ahead and had her other baby while she could I speculated that perhaps I had it and got a wishy washy doctor years ago and never had another baby despite trying. What is the laprascopy going to do other than verify it? Try not to worry so much (particularly about things like Ovarian cancer at this point) and find another doctor who gives you some much better advice than that person. I could tell you horror stories about some of these people who are so insensitive. Well I might not be very helpful here, but if you are in horrible pain then you might do something but if you can go for that girl, why not try and take care of everything as it is necessary.

Next question: How Was Your Endometriosis Diagnosed?