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Re: Advice wanted on endo?From: aina (anonymous@obgyn.net)Tue May 20 20:27:32 2003
Dear Karen (sorry for the rather long post), I, too, am new to endozone. Your story really touched me. I was diagnosed with both endometriosis and Polycystic Ovarian Syndrome (PCOS) when I was 19 (I'm 28 now). The endo diagnosis was a relief in a lot of ways because I was starting to think I was either crazy or had a low pain tolerance and was just being a wimp! The PCOS diagnosis was sad because it meant that I would have to most likely take fertility drugs in order to have children, and I had just become engaged to be married (we've since married and split up). The OB/GYN cauterized the few sites of endo he could find and I was fine for a while, but the pain returned with a vengeance. His recommendation was for me to go on Depo Provera. It was the best thing for me. My periods stopped and the pain with periods went away. For a while, though, I had residual pain with sex/arousal and had to take Amitryptaline (30mg) for a while to work through the physical/psychological pain that I associated with being intimate with my partner. Eventually it all subsided, but I ended up gaining about 50 lbs (2.5 stone?? I'm not sure of the conversion) due to the PCOS. The reason your post hit a nerve is because I'm wondering if your hair growth, boils and weight gain are completely unrelated to the endo, and more likely related to a hormonal change/imbalance (i.e., PCOS). In layperson's terms (and, really, that's all I am!) PCOS means that the hormones that make the ovaries pop out an egg aren't working properly, so the egg stays in cyst form on the ovary. There are several hormones at work (women are really AMAZING creatures!), including LH (lutenizing hormone), FSH (follicle stimulating hormone) and testosterone. Symptoms of PCOS include excessive dark hair growth, acne, skin tags, discolouration of the skin, long menstrual cycles, heavy and prolonged periods and (the jury's still out on whether it's a cause or symptom) weight gain. Most of these symptoms it would seem are the fault (?!!) of the testosterone. It might be a very good idea for you to bring information about PCOS to your doctor and ask if this is a possibility. Just my two pennies, but it's worth a shot -- all it takes is a blood test on the first day of your period to find out if the LH and FSH are in check. I, too, have a little more hair than I'd like (not on my face, but I wax my bikini area more often than most people) and I've been having weird acne breakouts, including larger boil-type inflammations along my jawline). My weight is coming off, but only since my husband left! Of course, I didn't come to endozone for my health (well, I guess I did). I've recently had a relapse of the endo, or so my doctor thinks. It's not really so recent, as I had been dealing with the pain in various ways for about a year and finally decided to put myself back on Depo Provera to rid myself of the periods altogether. It worked for a while, but I'm back to having pain when aroused -- not so much during sex, mind you, but during the leadup to it! It literally hurts to kiss my beautiful boyfriend (and I LOVE to kiss him). So, it's back to the OB/GYN and I'm scheduled for an ultrasound; I'm sure a laparoscopy is next. What worked for me to alleviate the pain, until now, is Depo Provera because it stopped my periods altogether. There are myriad side-effects associated with Depo, so do BIG research before considering this option. Before Depo Provera my menstrual pain also would extend from my hips right down my legs. I would have to ask people on the phone to hold while I doubled over from a cramp. My pain relief of choice was three extra-strength Ibuprofen. I'm angry with what your doctors have said to you. Fire them. They're jerks. Pregnancy is the solution to the problem (according to some doctors) because the endometrial sites have no food to grow, so they die. And by the end of the pregnancy, they're gone. My mum told me that she had the same problem when she was younger, but it went away once she had kids -- of course! My sister also has symptoms consistent with endometriosis, further confirming the supposition that the disease is hereditary. So, if you can (if your relationship is that open), it might be a good idea to ask your family members if they have the same symptoms as you. In the meantime, ideas for pain relief... Like I wrote earlier, my main source of pain relief is three Ibuprofens, but it can rip your tummy apart and isn't very good for your liver. Aromatherapy and relaxation exercises might work for you, too. I find lavender especially calming. Perhaps yoga could help, too; the relaxation work at the end of class is great for anywhere. If all else fails... a hot bath, a punching bag with the face of your least favourite doctor, a good cry, a great friend... And, really, if possible, I would fire your doctor's a** as soon as possible -- find one who will listen to you and help you. It is your right as a human being to be heard. Karen, I really feel for you and your frustration with this whole horrible thing. Good vibes to you, aina
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