Post # 1
Those of you with endometriosis, what tipped you off first that you had it? My mother suffered a great bit from endometriosis and I had a doctor tell me that this puts me at a greater chance to develop it myself.
The reason I ask is because I’ve booked a doctor’s appointment, but unfortunately they are booked solid until mid July. I feel like I’m showing symtoms, but I’m not entirely sure what to look for in early stages. I know everyone is different, but I was hoping you could share with me your experiences and maybe how you make yourself more comfortable? Obviously if my symptoms worsen I will head to the emergency, but it’s not really a trip I want to make right now.
What have you done personally about the cramping and discomfort? This month is the first month that the pain has extended from my period on to more like 3 weeks. My biggest tip off is that over the past 3 months my menstrual cramps have been more severe to the point I can feel them down my legs and in my lower back. They are also a lot sharper. In addition to that, sex at times can be painful and I’ve been very fatigued in general. This is not something I want to live with forever! These are the symptoms my docotor told me to look for, however.
I don’t have any other symptoms that would tip me off to an infection or something in that family. So bees can you share a little with me? I know its a sensitive topic, but I’m in some desperate need of relief and the regular PMS tricks are not working…
Also, those of you have been treated: Do you still feel discomfort at times? During sex as well? I really don’t want to loose that part of our relationship 🙁
Post # 3
Yes it does sound like endometriosis to me. I have pain constantly. Now I’m on continual BC and it has helped with the pain a lot. I also had surgery about a year and a half ago and a previous surgey back in 2006. I still feel discomfort during sex, it’s better if there is a lot of foreplay and taking it slowly.
Feel free to ask me anything and I’ll try to answer!
Post # 4
@MrsSaltWaterTaffy: Thank you for replying. I was afraid you were going to say the pain is frequent. It’s been getting worse over the past 3 months to the point where it is an all day thing now. I’m not one to self diagnose, but I have a history of cysts and that type of thing, so endometriosis is something the doctor made me aware of a couple of years ago. This morning I woke up and felt a bit of relief, but after having sat in my chair for a few hours I was right back to being sore. It gets worse toward the evening and I seem to get it on both sides as well. Does this sound right to you? Do you find that there are small things you can do to help the discomfort? Like diet or exercise maybe? Thanks again 🙂
Post # 5
Yeah that sounds a lot like mine. You almost might have Pelvic Congestion Syndrome which my specialist diagnosed that it focused on the sides. I think that being active does help it, I’m feeling a lot better now that I’m working out more often.
I didn’t really like the Lupron, the side effects were awful and it didn’t keep the endometriosis away very long.
It does sound like me that it just started at your period and got worse with time until it was all the time.
Post # 6
@MrsSaltWaterTaffy: I had complained about symptoms the last time I saw my doctor for a pap (6 months ago) because my cycle had become heavier again. She basically told me it was a posibility, but that nothing was sever enough to take a better look yet. I think since then it has definitely gotten worse, but I’m not sure what the progression is like with this condition. I hate that I have to wait a month to see my doctor. They won’t do pelvic exams at the walk-in unless it’s an emergency, so that won’t work either. Thank you for your input. It does make me feel like crazy to hear someone else is going through this.
Post # 7
Honestly, you might want to go to another doctor. I don’t like that she dismissed you saying that it wasn’t severe enough. Any endometriosis could cause infertility and pain, that’s not severe enough for her? She probably won’t be able to tell much from a pelvic, usually the only way to really see endometriosis is through surgery.
Post # 8
I have a family history as well. I have no real symptoms of it at this point – thank goodness, but my fertility doc recently found 2 endometrioma cysts on one of my ovaries. Usually, this type of cysts means I have really advanced endo. I’ve read that it can actually be more painful in the early stages, and less so as it gets more advanced, for what it’s worth.
Just as an FYI, there are holistic ways of managing symptoms & reducing spread than can be really effective for some people. An anti-inflammatory diet can be really helpful, especially things like cutting back on dairy, sugar, and citrus, as can reducing exposure to excess estrogens like soy and meat. But different folks have different triggers. I think acupuncture can also help relieve pain, and a naturopath can prescribe chinese herbs that may help too.
Hope you find a way to feel better soon!
Post # 9
@MrsSaltWaterTaffy: I’m starting to agree with you on that…
@MerryC: Thanks for that info!! I’ve been having more pain the last three days and guess what I have been gobbling down? Humus! Tons of estrogen in there… I wonder if that triggered more pain for me. I’m a big fan of holistic healing so I will look into an anti-inflammatory diet because I haven’t heard of that one before.
Post # 10
I had a ton of pelvic pain (really low–like in the pubic area and near the hipbones) that didn’t go away. My periods were horrendous–very painful and very heavy. And even though I started having problems with heavy periods when I was 15, no one bothered to check for endo. I didn’t start having pain until I was 19, and I could NOT get a doctor who was willing to check for anything. I heard “You’re too young to have anything seriously wrong, especially since you’re on birth control pills–just chart your pain and we’ll talk at your appointment next year.” By the time I found a doctor who would help, I had spent over two years in constant pain.
When I finally found a gynecologist who would listen to me, he was skeptical–after all, BC usually helps with the pain and growth of tissue. But when he did a pelvic exam, he noticed some abnormalities near my fallopian tubes and gave me the option of having a laparoscopy. I did, and lo and behold–endometriosis. My doctor removed large sections of tissue (both normal and abnormal) to try to prevent rapid regrowth. And I was totally pain free for four months!
It’s been four months since the surgery and the pain is coming back a little bit–just enough to make me nervous. I learned that every time you have a period, the estrogen allows (and even promotes!) tissue growth. Once I finish my current cycle, I am going to start a monophasic pill and take it for as many months as I can without spotting, then have a period. If all goes well, I’ll only have three periods a year, which should slow the growth.
Before I had my surgery, nothing would even touch the pain. You could often find me doubled up in agony on a chair or bed. Now, I’ve found that an antiinflammatory helps (Aleve is a godsend for me). I am really hoping that it doesn’t get bad again, because it’s a miserable thing to have. =/