Women with endometriosis?

Question

I'm constantly researching endometriosis and trying to get as much info on it as possible. My doctor and gyno believes that I have endometriosis, but we won't know for sure until I have a laparoscopy done in about 6 weeks. In the mean time, while I'm waiting to have the laparoscopy done, I want to see whether I can find out some information from women who has been through the symptoms, pain, struggling/struggled with finding a diagnoses and their experiences.

What symptoms did you experience before you were diagnosed and how were you diagnosed? Was it via laparoscopy? And how long did it take before you got a diagnosis? What treatments did you receive after you were diagnosed and did/does the treatments for your endo work or have bad side effects? What symptoms do you still experience?

Any answers would be greatly appreciated... I guess it's also for a bit of peace of mind to realise I'm not alone and that it's normal to be nervous and scared.

Thanks in advance...

Answer 1

I was diagnosed in Aug of 1997. This was after having spent 9 months pretty much bed-ridden because of the pain. I also found that I couldn't sleep on my side (right moreso than left) because of the pain.

It took 9 years for me to get diagnosed. I use the pill to treat my endometriosis and one of my other medical conditions along with surgery as I need and another medication when necessary called Zoladex (it's a medicine that gets injected). I have found that these treatments do help to try and keep my endo in check.

Whenever my endometriosis acts up I will sometimes get nausea. I will also feel cramping and also pain around my ovaries. I have to be careful (even now) how much I can lift because it makes the area hurt more.

When I have problems with scar tissue that the endometriosis can cause I get a pulling sensation. The very first time that I had problems with scar tissue it felt like someone rubbed a piece of plastic on my arm real good and then after a few minutes pulled it off super fast.

It is definitely normal to be nervous and scared about a surgical procedure especially if it's the first time to ever have surgery. And above all else you are definitely not alone.

Answer 2

Ive seen one gyno through the public health system and was completely brushed off, now im waiting 3 months to see a private one. I get severe pain mainly on my right hand side (ive even been hospitilized twice because they thought i had appendicitis), diareaah a day before and all the way through my period, horrible cramping, nausea and i start feeling really really depressed that all stays on average for 1 1/2 - 2 weeks, then the next 2 weeks im starting to feel ok again, but then i know in 2 weeks time im going to feel like it again. Its really annoying. I was on the pill a few months ago which was working for pain alot, then my body got used to it and the pain came back, so i stopped taking it. 3 Doctors in the emergancy room think i have endo from my symtoms and the fact that nearly every girl in my family has had it and ended up having a hysterectomy, and the fact that ive had a massive ovarian cyst that leaded into me getting that and my left ovary removed, i had that done 3 years ago and they gyno i saw yesterday said that considering ive already been cut open they would of seen any endo then and i wouldnt have any now, but as most people that reasearch it would know it can grow in that time. It seems like its a long path to go down to finally be diagnosed and get some sort of treatment, which gets pretty frustrating. Im only 19 and i dont work at the moment, but its getting to the point that if i do get a job ill probably loose it because i know that for 2 weeks of every month im going to be pretty much bed ridden.
I hope your lap goes well and you find out whats going on!

Answer 3

Before I was told that I had endo I had awful periods, w/ severe cramping, nausea, and I couldn't sleep. I was first told that I had endo by the doctor, because of the symptoms that I described. However they also did a lap and then it was confirmed. I dealt w/ all the side effects/symptoms since high school, but was finally told 6 years ago this past July. (I am now 27) After the endo was confirmed I was put on BC pills, but those didn't help, so they then switched me to the Depo shots, I had 7 shots in 5 months ( I don't recommend it) However it made me sicker then the endo so I was then taken off and was then put on Lupron (yes it has side effects, but to be honest they weren't as bad as they sounded.) After the 6 rounds of Lupron I was then put on the BC patches. But they didn't work so then it was time for a 2nd lap. After that lap I was again put on the Lupron and went about a year pain free. However since then I have been going through it all again, the pain returned w/ a vengance, after a 3rd lap, another round of Lupron, 2 months on Danazol, having to travel to Chicago (I live in Springfield, IL) I was then put on Femara. This is a new medicine (usually it's used for Breast Cancer patients) but I feel great. I still have some bad days, but not nearly like I did. I still have severe cramping and at times I get so nausea but nothing compaired to even a year ago. And when it comes to having a lap done. Take it easy the first and second day, by day 3 I was up and moving...a little slow, but moving, and it got better from there.

Good Luck

Answer 4

I was diagnosed with Endo 10-12yrs ago, luckily i had already had my 3 children and did not want any more. I have it between bladder & bowel & on an ovary, that they know of, & i get a lot of symptoms, including bowel problems, leg pain, upper back & arm pain, severe pelvic pain, buttock pain, ovulation pain, the list goes on. Endo can affect the immune system, so you may be more likely to get more side effects from the treatments than normal. Over the years i have taken birth control back to back, which helped for about a year then pain came back. I have tried the depo jab, which was not at all helpful. The mirena coil, which made me bleed/spot for almost 5mths solid & a 3 month course of strong provera tablets, which made abdominal pain worse, in fact my pain seems to have worsened after each treatment. I am going to have a hysteroscopy and d&c as well as a laporoscopy to investigate full extent of the endo, & ablation of endo next week. The operation can cause scar tissue/adhesions, but when the endo grows & bleeds each month, the blood has nowhere to go & this too can cause scar tissue/ adhesions, so it is a bit of a vicious circle. I have 2 books which have helped me alot over the years. They are "The Endometriosis Sourcebook, by Mary Lou Ballweg & the Endometriosis association" and "Living well with Endometriosis, by Kerry-Ann Morris" they are both available from Amazon. The first book deals abit more with infertility though.

Answer 5

I have had 2 laps since 2002. I had all the same symptoms...although it it true that you do not know until you have the surgery. It is not painful....with that said you do get gas pains in your shoulders b/c of what they use to "blow up" your tummy to see everything. Use a heating pad.

I noticed a complete difference after the laps...I also went on birth control for 3 mo at a time so suppress a period from coming, which prevents growth of the endo. This is what worked for me. everyone is different.

Answer 6

You really need to read "Endometriosis Bible & Violet Protocol" by Zoe Brown (also available in electronic format here: http://www.endometriosisbible.info ). It's about how to eradicate endometriosis disease forever. It worked for me, you will see results in only a matter of weeks. Good Luck!