|
Post by irishgirl on Nov 21, 2012 9:15:59 GMT -5
I am in the process of figuring out what is happening to me. I see my Gyno next week. He has already offered to do a lap....so I guess we will discuss that. I am having horrific groin (at the crease of my leg) and thigh pain. Is this normal? I am not just having pain at certain times of the month, it's all month long! I am going crazy. The groin pain makes it very hard to stand and walk for any length of time. Could endo really cause all this?
|
|
|
Post by willow82 on Nov 21, 2012 18:22:07 GMT -5
I had this, and it was awful. Mine was usually the worst around my period but it was pretty much a constant thing. The pain would go from my groin and into my leg, and mine was worse on my right side. Mine gradually started consuming more and more of my life for about 2 years.
Turned out I had deep endometriosis throughout the rectovaginal space on both sides, with cysts and other nonsense in that area on the right side. When I first explained my thigh pain to my doc he asked if it was also in my groin, and of course that's where my worst endometriosis was.
I'm a month and a half post laproscopy and that pain is GONE! It was a little scary the first month of recovery since obviously those areas were still raw from surgery and I had some intermittent pain, but I get none of it now!
My pain in that area was so bad I spent a lot of evenings in tears, and would have periods during the month where I walked with a limp because of it. At it's worst I would also get numbness in my toes, and have muscle spasms in my toes.
So to answer your question, YES endo can cause this!
|
|
|
Post by irishgirl on Nov 21, 2012 19:03:14 GMT -5
Oh my gosh, I'm so sorry. This is the absolute worst. I have been through so many tests to try to figure out what's wrong with me. I have had MRIs, X-rays, CT scans, all clear except the pelvis scan which showed another decent cyst, which I said, "OK, it's time to talk." Everyone keeps telling me its got to be orthopedic bc no one realizes how bad endo can get. I have tried gentle stretching and Pilates which absolutely made it hurt worse! My husband is amazing and I don't know what I would do without his patience and calmness bc everyday I am in tears. Nine months ago I was a happy, fun filled 39 year old playing with her kids. Then the ache in the back began and it has progressed ever since. And that was the end of the happy days. I've had 1 D&C and an ablation because of three months of bleeding spells and so I no longer have a period, but ovulate still. Typically I haven't kept track of my ovulation bc it didn't mean a whole lot-until early this year, when the pains just got worse and worse. I don't wish this on anyone.
|
|
|
Post by semicolon on Nov 21, 2012 19:57:52 GMT -5
I haven't had groin pain, but I do have a good amount of left hip pain. I had endo removed from one of the pelvic ligaments and it did improve, although adhesions and some other issues have brought it back a lot. It is amazing how pain can be referred. I had endo on my diaphram and had cyclical shoulder pain and side pain with breathing- gone since it was excised. If you can see an endo specialist I highly recommend it, they are the most skilled at finding and removing endo for pain relief. Welcome, and good luck!
|
|
|
Post by JC on Nov 25, 2012 8:47:41 GMT -5
You'd be surprised the type of pain endo can cause! Endo is so different from woman to woman. People think that your symptoms are supposed to be confied to the pelvic region and that's just not true, especially when you get it on your ligaments, nerves, and tendons. That's when you start getting pain in the most random places. Does anything help make it better?
|
|
|
Post by irishgirl on Dec 3, 2012 21:55:45 GMT -5
Nothing makes it better except less movement. I went to my doctor and because my pain is not just during my "cycle" he is refusing to do the lap. He said he doesnt want to put me through the procedure and find nothing. He is treating me like a textbook and its very frustrating. I left and sat in my car and cried. I finally decided that a new Gyno is in store and made an appointment today....but can't get in til mid Jan. The drs who are endometrial specialists are always for infertility and since I'm not trying to get preggers, I'm not able to get in. The lady I made the appointment with is a chronic pelvic pain specialist, so I'm hoping she can help me out, and will realize that these pains can be chronic. I'm tired of people asking how I'm doing and never having anything positive to report......
|
|
|
Post by semicolon on Dec 4, 2012 7:24:27 GMT -5
Irishgirl- where do you live? In the States, most true endo specialists who do excision surgery are actually not fertility docs. Since endo is a huge factor in infertility, these docs often think they are experts but their goal is often pregnancy rather that long-term management of the disease. Frustrating! I'm glad you are looking at other doctors. Endo on the ligaments takes a lot of skill to remove, and this guy just doesn't sound like he has it!
|
|
|
Post by irishgirl on Dec 4, 2012 9:21:04 GMT -5
Semicolon, I live in Ohio. Any thought there? The bad thing is that I had such a great relationship.with my gynecologist ntil this. When he did the endometrial ablation, two years ago, he did not tell me or give me a reason WHY I was bleeding so heavily. Could they see endo when doing an ablation, do you know? All he told me was that he got a "good char."
|
|
|
Post by semicolon on Dec 4, 2012 21:42:16 GMT -5
An ablation is usually inside the uterus, while endometriosis is endometrial-like tissue outside of the uterus so it is unlikely your doc would be able to say whether or not you have endo based on the D&C or ablation. "A good char", that just sounds unpleasant :/. If you like this doc there thats great, hopefully he would understand you wanting a second opinion but keeping with him for regular exams. If not, maybe you have unfortunately run the course with him.
I have heard of two speclists in Ohio, from another site with patient-recommended doctors: Dr. Maurice Chung or Dr. Ross Marchetta. I believe they both do excision (cutting endo out), but I no personal experience with either doc. Look them up and see what you think.
|
|
|
Post by irishgirl on Dec 5, 2012 7:50:28 GMT -5
Semicolon, Thank you for the information. I will check them out. Does anyone know about the Cleveland clinic? Not sure if anyone has been there, but I think they might be reputable too? I'm about 4 hours from there, but I would go to NY if it needed to happen. (I have a friend who lives there who I could stay with during recovery). Thank you for the information about the ablation and that makes sense. My husband said to me, "we'll, he showed us pictures of before and after the ablation....he would have seen it then." But you're right, he wouldn't have! The ablation was good in some ways, since I now have to period. But it has also been an issue since having it done.....I've not been the same since having my 2nd daughter, and I'm not whining, I def don't want my 85 day bleeding back, but the awful pain is terrible.....and since it seemed like I just menstruated all the time, I def think I am continuing to do this now....just with pain and no blood......
|
|
|
Post by irishgirl on Dec 5, 2012 7:51:32 GMT -5
Sorry, that should say No period....not too period! Hahahaha
|
|