26 answers

Endometriosis Advice

I am looking for women that have any advice or suggestions in regards to endometriosis.
I have been to the OB/GYN for symptoms, had an ultrasound to rule out cysts, but was told you can't be diagnosed w/out having a procedure done. It seems like 2 weeks out of the month I feel good, but the other 2 I have some sort of pain. When I have my period I can have excruciating gas pains, it doesn't happen every month, maybe every other. When I am ovulating I have nausea, and pressure when I go to the bathroom. Some months are better than others. Some days I feel like I am losing my mind, but I know what I feel. Has anyone had any similar experiences?

What can I do next?

So What Happened?™

I couldn't believe the responses I received. Thank you. I went to the OB/GYN today and I am going to first go to a Gastroenterologist, because when I have my period and have a bowel movement sometimes there is blood when I wipe. I know TMI (to much info.)
I read that can also be a symptom of endo., but she wants to rule out anything else. After that I am scheduled to go back to my OB/GYN to discuss a possible laparoscopy.
Thanks again for all your help.

More Answers

I have had my self tested for it. My mom had it, She told me that she would have realy heavy bleeding and very painful times of the mnth. It took my mom years before they would listen to her. I had the ultra sound done and the yearly check up. But they didn't say anything about any other test. I wouldn't give up on finding what is wronge. You know your body and sometimes doc are just idiots.

Have your symptoms gotten beter or wrose since the children? Are you on any birth control. Some doc. will put you on to help with the symptomds.

Best of luck

A.,

I was diagnosed with endo about 7 years ago. I did end up having the exploratory laproscopy and the recovery was fast. I have tried numerous treatments including birth contol pills (no effect) and Lupron Depot. Lupron was great but the drawback is it puts you into temporary menopause - hot flashes, bone loss, etc. However, I felt terrific on the Lupron. I did two courses of it over two and a half years. I was facing a hysterectomy at the age of 36. I decided to try to get pregnant and now I have two beautiful children.
The endo is back and I will be deciding what to do next.
The key is to find a sympathetic, knowledgeable ob/gyn . Also check www.endometriosis.org
Gastrointestinal complications are very normal with endo as are cysts and excessive bleeding. I get a lot of pain around my period. Before the Lupron I was unable to digest vegetable and fruits. It can be quite miserable but there are many of us out there who have it and you are not alone.
A.

Hello. I am actually sitting here today. My first day out of the hospital since getting a hysterectomy. I had endometriosis. The symptoms are normally painful, heavy periods, pain during intercourse is a big one and mine got so bad that it was constant. A dr. cannot rule out endo just by doing an ultrasound. This does not show up on ultrasound he/she would have to go in with a laprascope to find it. Mine was found during my Novasure procedure, which failed and that is why I am sitting here now recovering from surgery. Also, don't let one dr tell you it is not. Some drs don't like to diagnosis endo so make sure you get a dr you are comfortable with and get someone that is thorough in his/her work.

A., I know how you feel. keep going back to the doctor. he will sooner or later listen to you. i had cervical dysplasia at 21 yrs. hysterechtomy at 30 yrs. and endometriosis and also overies started to turn cancerous at 32yrs. they took them out FINALLY.i complaned for 5 yrs from age 25 to 30 when they finally did sonograms then liproscopic surgery.then had to have major surgery to get uteris out. it was 3 times the nomal size. so my advice is if your doctor don't listen after a while (GO TO A NEW ONE) you know your own body. GOOD LUCK-(M. S.-MOTHER 41YRS OLD.5- CHILDREN AGES 26-16 YRS. AND 3 GRANDCHILDREN 16MONTHS -4MONTHS OLD.

I have endometriosis and some months are better than others like you say. It is basically when tissue builds up on the outer lining of the uterus. When it gets severe enough the tissue can start to build up on organs surrounding the uterus causing more problems like intestinal issues and such. You will notice the most flare ups around the time of your period. You can do things like go on birth control but there are sometimes added cons with doing that like health risks and weight gain. I would research the disorder and weigh out your options. The bad thing is, if you have it, you really should find a treatment plan for it and stick to it. I also have PCOS (polycystic ovary syndrome) and I use Metformin therapy. It seems to do the trick because it regulates my hormones which in turns keeps the formations of the cysts to a minimum but I have also noticed that the endomitriosis has not gotten any worse since I started treatment.
Just keep communication open with your doctor and remember that they are the proffessional. If you don't trust that one for any reason, find a new one! It's your body, take care of it!
Good luck!
M.

hi A.. im sorry your not feeling well. can i ask you... does it cause discomfort during intercourse? i had some similar problems and mine definetly have interferred with my love life. i find it odd that your dr cant do an ultra sound. they can pick up on some signs with an ultra sound and then do the laparscopy later if needed. the procedure you are talking about i believe is a laparoscopy. its an outpatient porcedure. i had one done last year at the same time i had an episiotomy revision after child birth complications. i was out for the entire surgery, but i think if you are only having the laparoscopy, they may not put you under completely like they did me. i was sore from my episiotomy. but not too bad from the laproscopy. during the procedure, my doc found some adhesions on my fallopian tube that she said was maybe contributing to my pain. no signs of endometriosis though. it was pretty easy to recover from that. my belly button was sore for about a week. the only thing i had a hard time with was the meds. i couldnt really take them and still care for my then 3 month old daughter. and the soreness was difficuilt in my abdomen for a few days if i held her and she kicked me or something. but since your children are older, maybe you wouldnt have to hold them or pick them up for a few days? also, since last year they have found ovarian cysts and ueterine fibroids, which can also cause pain and heavy menstral cramping, and abnormalities with bleeding. mine are small and dont require surgery yet. sometimes they just go away on their own. just make sure they rule these out for you. mine were found by a pelvic mri and then later confirmed by ultra sound. i wish you luck. i dont have endometriosis, but i have had my share of complications in that area. so if you need someone to talk to, i will definetly have a sympathetic ear! hope you get well soon!

My doctor thinks that I have endometriosis because I would get menstraul cramps so severe every month that I would be in the er getting shots of demeral and morphine. I was told that I could have a procedure done or that I could try the depo prevero shot. My doctor informed me that the depo shot thins the lining of the uterus and is a good step in treating endometreosis. I chose to start recieving the shot and have not had any problems since. My menstrual cycle has stopped completely and I have not had a single cram since. This may be something you would want to discuss with your doctor. Good Luck!

I had severe endometriosis and was finally diagnosed with a laparoscopy procedure. It is not bad and they lasered it out. It helped for a while but because mine was so bad it came back. I had the procedure done several times and also went on medications to stop my periods. I went through infertility to have my daughter and then ended up with a full hysterectomy a year later. I suffered extreme pain 3 weeks out of the month and also had bouts of IBS as well. I would definitely advise you to have the lap done. They go through your belly button and your a little sore for about 2 -3 days.

I've always found www.webmd.com a good resource for medical questions. They translate "medical" into English, very well, LOL!

Hi A.,
You may want to talk to your doctor about getting a blood test for "CA 125". There is a correlation between this marker and endo. It is a simple blood test that you can try before surgery. Best of luck getting a diagnosis.

I recently went to the OB with symptoms and was told the same thing about not being diagnosed without a procedure. She said this is probably what I have, but we can't be sure. My symptoms are different, but from talking to the Doctor and looking on line, there is not a whole lot that can be done without a procedure. My doctor said that the only thing that might help was birth control pills and it seems to have helped me out a great deal. I still have some problems, but they seem manageable now.

I have had 2 laparoscopies for ovarian cysts and will most likely be having another here soon for another cyst that doesn't seem to want to go away! Anyways, my doc thought I had endometriosis and lookied while in already doing the procedure bit didn't find any. The first one I had adhesions and they removed those. I am sorry you are going through that. I get pain like that all the tiem but they come from cysts.

If you do not like your doctor go to another. I have a friend with severe endometriosis and they gave her a total hysterectomy. Remember, every case will be different.I think it is important to find out what is going on.I also do not think that you and to go on with all that pain. You have to take care of yourself first. If you live in the deptford area call dr.keswani he is on manuta pike in west deptford. he is great and my friend who had the endometriosis really like and felt like he listened to her and referred her to a great surgeon.

Dear A., just wanted to tell you that a few years ago, I duffered the same symptoms as you besides th epain and the nausea I also experienced a large lump in my groin area for which I thought I had a hernia because every month usually around the time for my period the lump would get larger and mor painful, so I went to a doctor and he told me that it was if fact endometriosis,which is the outer lining of the uterine walls start to come outside of the uteras,my advice to you is to check with your ob/gyn again, this problem usually occurs in women who have had a cesarean, the best of luck to you. D.

Get a product that provides healthy bacteria (culturelle, etc.), and take it every day.

Get sufficient fiber in your diet...with plenty of water.

These are not directly involved with endometriosis...but much of the pain involved is due to gas and 'clutter' in your intestines. Both of the above will improve your general health.

I had a hysterectomy for endometriosis. I'm not sure it was the best for me at the time. (Endomtriosis is when the lining of the uterus slips out; causing a lot of back pain...and hindering conception.)

KayMarie

Hi! I have endo, diag w/it @ the age of 20, I am now 35, I've had 3 laproscopies & I have done the shots as well. I was told sometimes after child birth u will feel much better in ref 2 mthly pain & I do. I don't feel cured, but alot better before I gave birth. I would have daily pain that was excruciating.

I don't have advice, but I've been there. I've have no kids, I have been on/off the depo shot for 11 years, when I tried another birth control, I was in pain and had multi periods in a month, it continued for about 2 months, then I renewed my shot, Now I have minor reoccuring pain in my lower belly, but nothing like it was. I have been told by my Dr that the shot helps to lesson endometriosis pain, only if it completely removes your period. BUT....My sister took the depo shot and had her period for three months straight.

A.,
I'm an OR nurse and I can tell you that ur gyn is absolutely correct. If endometriosis is the problem it must be definitely diagnosised, and that is thru an exploratory laparotomy. Operating room time roughly an hour. Ur health care provider is the best answer to your questions.
C.

Hi A., I have been married for 18 yrs. too. I have one precious 13 yr old daughter.....and the reason I was only able to have one child was my horrible endometriosis. (I'll explain in a minute). First, I want to tell you that I know what you are experiencing. I spent half of the month or more in pain, and then my periods were awful as well. During my period I would have heavy flow, cramping, sharp gas pains and pressure. When I would ovulate I could hardly walk sometimes, because there was so much pain on one side. I had an ovarian cyst rupture....well you the point....endometriosis is nasty stuff! Yes, You are right for a diagnosis you would need to get a procedure called a laproscope. You're put to sleep and the Dr. uses a scope with a camera to film your uterus,tubes, ovaries, etc...(going through 3-4 tiny incisions in your tummy). There can be gas pain and pressure during recovery, but that's the worst of it, and you do learn valuable info. Also while the Dr. does the scope he will remove any endo he finds. It can grow back, but sometimes it doesn't. I had a severe case that requied 3 scopes and finally a hysterectomy after I had my daughter to finally relieve the pain. Endometriosis especially loves the prostoglandins in the uterus and that contributes to a lot of the endo pain (or atleast mine...I'm pain free now). There are books on the subject if you try your local library. But the best thing is to see your Gyn. or other other speclist in Women's Health.In the meantime put a heating pad on your belly, and take some motrin product 600 - 800mg , if you can tolerate it, and it's ok with your doc. make sure the twins have a quiet time so you can rest when you're in pain. I hope this helps. Good luck. W.

Hi A., gee...been there. I've had 3 laparoscopies for endometriosis, adhesions, ovarian cysts...it's not fun and I do feel for you. My pain was severe, but didn't have a lot when they did the surgery. Unfortunately I have to live with the pain and I notice it more around the time of my period (which is mostly the cysts). They say being on the pill or pregnant helps, well, I just had my 3rd (and final) baby and right now I'm not on the pill for it. I had my tubes tied so I'm not on them anymore, but it's a medical reason and they would if it got worse. Good luck.

I have endometriosis and your symptoms sound similar. I was unable to do anything for two weeks of the month. I had the procedures done (one to see and one to remove the spots) Both are minimally invasive and not a big deal. Now my pain is managed by a non-stop birth control pill. It's great -- no period and no pain. Good Luck!

Hi A., wow I feel like I am having flash backs listening to you discrib your symptoms. I had moderate to severe endometriosis until I had a laparoscopy procedure done in 2002. After that I had a lot less pain and lighter periods. The procedure was not that bad either. It was an out patient procedure, they made small incisions, less than and inch long. You've had four kids, it will be a piece of cake! You have to take it easy for a few days and don't do a lot of heavy lifting. I was back to normal in two days. There is always the chance the endometriosis will come back over time, but the procedure was so easy I would do it again if the cramps and heavy bleeding. Make sure you talk to your doc about all the risks and benefits. Good luck!!

I also was a victim of endometriosis. Have the test done. It's really not that bad and I am the worlds biggest wimp. First I tried birthcontroll continuously so I would not have a period. Then I was on a nasal spray to stop my monthly. Finally, after being tested, I have had 2 laperoscopies and three kids later I am pain free.
Joanie

Hi A.,

I have endometriosis that has been diagnosed by laparoscopy. I had the tissue that was there lasered away, although there is really no cure. The funny thing about endometriosis is that the symptoms are kind of vague, different for many people, and the they can mimic many other types of problems. Truly, the only way to diagnose it is through laparoscopy. I went through the process of trying to check many other things off my list of what it could be before deciding to go through with the laparoscopy. One thing they did try out with me was trying different birth control pills. Apparently the pill can help alleviate the pain. However, it did not with me!

The surgery was done on an outpatient basis and was under general anesthesia. I was out of work for about a week ( I was working as a nurse so on my feet and moving around). After that I was pretty good to go. It's a pretty quick recovery, but of course, surgery doesn't come without some risk.

I know how frustrating this is when it seems like you have this vague pain and nobody can tell you what it is. I used to sometimes wonder (before it was diagnosed) if I was just imagining it! You'll have to weigh the pros & cons of surgery and decide if it's worth it. Oh yeah--and when they do the surgery they can laser the "bad" tissue away to help with the pain. It did work for me and I am to the point where I do not notice the pain at all these days. And this was 10 years ago. You're not out of your mind. My pain would also come and go when it felt like it and it was hard to even notice a pattern sometimes. Let me know if you have any other questions.

I don't have exactly same symptoms, but can certainly recommend a GREAT place to go for help. Holistic Family Healthcare in NJ. Her website is www.holisticfamilyhealthcarepc.com and her name is Elaine Hardy, RN, APN, C. She's an Advanced Practice Nurse with her own practice and she finds the cause of the symptoms, not just treats them. I'd give her a try, when I am in the waiting room, I hear nothing but awesome things about how she has helped so many people from 1 yr old to seniors! good luck to you!

A.,

I work in a chiropractic office and I have seen many women respond favorably to their symptoms whether it be endometriosis or fybromyalgia. It is very painful and you shouldnt have to go through this much pain. By removing the subluxation (mal-alignment) the nervous system is able to restore nerve imbalances, which can lead to a variety of health problems in both the organs as well as nerve supply. What could it hurt for you to make an appointment for a consultation. A consultation doesnt cost you anything. Just a conversation of your family history and symptoms to the doctor. Most insurance plans cover this type of care. If you have a family chiropractor, please call him/her. A good doctor will always be willing to work in conjuction with your other doctors. I wish you well. If you have any additional questions, email me.

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