https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom Style Advice for Fashion Lovers en-US Wed, 29 Apr 2026 05:00:01 +0000 http://bbpress.org/?v=1.0.2 q https://youlookfab.com/welookfab/search.php https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-974208 Tue, 09 Jul 2013 03:33:05 +0000 Angie 974208@https://youlookfab.com/welookfab/ <p>I'm sorry, Raisin :(. It's awful to feel grotty. I have no words of wsidom, but hope you are sorted soon. ((HUGS))). xo </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-974050 Tue, 09 Jul 2013 01:27:30 +0000 Raisin 974050@https://youlookfab.com/welookfab/ <p>Forgot to mention that I called my OB today and there are no more appointments until Sept because of summer vacation. So I have a few months to wait it out, unfortunately. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-974041 Tue, 09 Jul 2013 01:19:27 +0000 Anonymous 974041@https://youlookfab.com/welookfab/ <p>Yes Rae, please see your doctor. I hope you can get some sleep and the nausea passes soon. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-974020 Tue, 09 Jul 2013 01:08:36 +0000 Isabel 974020@https://youlookfab.com/welookfab/ <p>Raisin, you need to be certain that what you are having now is indeed endometriosis. &nbsp;Please don't assume that it is just because you were diagnosed with it a couple of years ago. Please please call the doctor. It could even be an ectopic pregnancy.&nbsp; </p> <p>Not all women with severe endometriosis have sever bleeding. That is why some women go for so long without knowing.</p> <p>But, hot water bottles helped me sometimes and other times it was ice packs.&nbsp;</p> <p>But please, please talk to your doctor to be sure that is what is going on.&nbsp;</p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-974010 Tue, 09 Jul 2013 01:02:54 +0000 Raisin 974010@https://youlookfab.com/welookfab/ <p>Thank you all for the great insights and wisdom. I'd like to respond more carefully but as it happens, I am having a really rough time with it today and feeling a lot of pain. In fact I'm really surprised and how out of hand this seems to have gotten in such a short time and how much worse each month. Right now my back is absolutely killing me from top to bottom and my legs are aching. Pelvis feels so full. I am sort of at a loss for why I miss my period lately (I never have in my life other than being pregnant) since I thought one of the biggest signs of endo was heavy periods. Mine seem to be disappearing on me. I'm afraid everything is stuck inside me and causing all this pain. Well I feel horribly nauseas so I will be off to bed, but I really do appreciate all the help and I think there is a lot for me to look into. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973984 Tue, 09 Jul 2013 00:46:45 +0000 Isabel 973984@https://youlookfab.com/welookfab/ <p>I was diagnosed with severe endometriosis at 18. &nbsp;My periods started when I was nine. &nbsp;My doctor, at a teaching hospital in Boston has said that I am the second worst endo patient he has had. &nbsp;I have been with him 18 years and prior to that, with another specialist for 12 . &nbsp;It was so bad for a couple of years that I could not schedule two college classes back to back. &nbsp;I had severe bleeding, ovarian cysts, migraines, back pain...you name it. &nbsp;I have had endometrial tissue on my bladder, diaphragm, and a kidney ( and my reproductive organs, particularly one ovary ). &nbsp;In fact, I still have all the scarring in all those places after 3 laps to burn it off. &nbsp;So you get the drift. &nbsp;But I am still a really, really happy and productive person. &nbsp;LOL ! &nbsp;It is not the end of the world. &nbsp;But it needs a lot of management and tweaking. &nbsp;Sometimes things work for a while and then they stop. And it can get depressing.&nbsp;</p> <p>I have done it all. &nbsp;BCP part of the time, BCPs 10 months out of the year to mimic pregnancies, laproscopies, Lupron shots, Progesterone and accupuncture. &nbsp;Different things helped at different times. &nbsp;No alcohol or caffeine definitely helped me a lot &nbsp;( I had a complete hysterectomy this Spring related to breast cancer ). &nbsp;One of the main complications of all this treatment is bone loss. &nbsp;So you really need someone who knows what they are doing and keeps tabs on your bones. My specialist says that they don't know of any holistic measures that help. Though he did refer me to accupuncture and yoga.&nbsp;</p> <p>BCPs regulate your cycle and prevent overgrowth of the endometrial tissue. &nbsp;I would take them for about 4 or 5 years then do a laproscopy. Otherwise, I would have needed a lap about every 18 months.&nbsp;</p> <p>And you are absolutely correct regarding autoimmunity. More doctors are starting to believe that it is, in fact, an autoimmune disease. &nbsp;I wouldn't be surprised at all.&nbsp;</p> <p>Anyway, here is some good info :</p> <p><a rel="nofollow" href="http://www.womenshealth.gov/publications/our-publications/fact-sheet/endometriosis.cfm">http://www.womenshealth.gov/pu.....riosis.cfm</a></p> <p>If you need anything, please PM. &nbsp; </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973912 Mon, 08 Jul 2013 23:39:01 +0000 Thistle 973912@https://youlookfab.com/welookfab/ <p>I can't offer you any advice. I just hope you feel better soon.</p> <p>And 29 is very young. I was quite a bit older than you when I had my DD. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973904 Mon, 08 Jul 2013 23:31:33 +0000 Suz 973904@https://youlookfab.com/welookfab/ <p>I was going to mention ablation, too. In my own case I didn't go that route because I was hoping to get pregnant (at first) and then after the surgery, things were never quite as bad....</p> <p>But I completely understand your disinclination to close that door at 29. I had the same feeling at 39, and that's why I just tried to live with it! In retrospect, though, I have to echo ...um...Echo! (LOL) Truly, I have never felt better and healthier than since my periods finally stopped. I had expected it to be a difficult transition, and instead it has been a huge benefit. So much more energy, health, and ease.&nbsp; </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973638 Mon, 08 Jul 2013 19:47:16 +0000 Echo 973638@https://youlookfab.com/welookfab/ <p>I didn't find out I had endo until after all of my procedures, but it does explain a lot in retrospect. I went for years bleeding so heavily and being in so much pain that I was out of commission for several days a month. I thought it was "normal" because I had always been that way.</p> <p>Then I started bleeding and didn't stop, and it became life-threatening. We did ablation (what Shannon discussed). That works for many people, although they do tell you not to plan to have any children after the procedure (it destroys the uterine lining) because it should leave you infertile (there are exceptions, of course).&nbsp;</p> <p>IN many cases, that is enough, but testing revealed I had abnormal cells, and I underwent a hysterectomy, leaving my ovaries intact. I was VERY much against the surgery and such drastic intervention and did everything humanly possible to avoid it. But the threat of cancer (and knowing I'd have to have a complete hysterectomy including removing the ovaries if cancer developed) forced the decision.</p> <p>Honestly? It has been the best thing I've ever done for my health. I have SO much more energy; I don't have pain; I am not so anemic that I just want to sleep all the time. It has made a world of difference. I don't want to encourage you to have any procedures you are not ready for, because only you know what is right for you. I just wanted to let you know that it might not be so bad if your symptoms are significantly interfering with your daily life. Severe endo CAN continue even after a hysterectomy for some people, but it often eliminates the problem.&nbsp; </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973579 Mon, 08 Jul 2013 18:49:37 +0000 rachylou 973579@https://youlookfab.com/welookfab/ <p>Well, I'm a Catholic<i> (joke: there's two kinds of Catholics, bad ones and fallen away ones; I'm a bad one ;&gt;) </i>and 'course Catholics aren't supposed to do BC and stuff <i>(please ignore the whole role Catholics, including clergy, played in legalizing the pill in the U.S.) (did I mention the joke?)</i>. Anyways, Catholics turn to NaPro technology. It doesn't use unique drugs or medical instruments, but it <i>is </i>a whole different playbook from your standard. I personally think it makes a lot of sense. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973538 Mon, 08 Jul 2013 17:58:07 +0000 Janet 973538@https://youlookfab.com/welookfab/ <p>I totally understand! Even though I'm almost 20 years older than you and never had any children, it was just a little hard to think that chapter in my life is definitively over and done. I was a little afraid it would make me feel "old." But you know what? I feel better than ever. :-)&nbsp;</p> <p>Best of luck to you. Keep us posted. Your doc and you will figure out what is best! </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973519 Mon, 08 Jul 2013 17:44:30 +0000 Anonymous 973519@https://youlookfab.com/welookfab/ <p>Good idea, Rae. At least you can explore the various options and then move on to make an informed choice.</p> <p>And I totally understand on the kids thing --- I am 99% sure we are done after having our 2 (and I am 36), but when I brought up a vasectomy to my husband, he (and I) felt weirded out to be making such a permanent decision. So it's on hold for another year or two, and then I guess we will decide. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973494 Mon, 08 Jul 2013 17:08:17 +0000 Raisin 973494@https://youlookfab.com/welookfab/ <p>Thank you all! I did not know if most of these options so you've really given me a lot to consider. </p> <p>I am not sure how I feel about a partial hysterectomy or anything that seals the deal on having no more babies. I can say that DH and I do not plan on having more kids. And I missed my period a couple months ago because of all that's going on and I can tell you I did take a pregnancy test and its the first time in my life I was so happy to see a negative! But I just find it so hard to put that part of life behind me. DH actually went to a consult for a vasectomy and we decided not to do it yet because even though I feel strongly we will have no more kids, it's just so hard to put the axe to it permanently at 29 years old. I think it has more to do with me not wanting to feel like I'm old enough that that part of my life is done, but it's hard to get over. Although even if I wanted to get pregnant I am sure my chances are slim since it took a laparoscopy to get it working last time </p> <p>Still I think I need to make an appointment with my OB/GYN soon to discuss. There seems to be a lot of options and I think that getting this taken care of sooner, rather than decades of pain is a good idea. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973431 Mon, 08 Jul 2013 16:15:40 +0000 Janet 973431@https://youlookfab.com/welookfab/ <p>Just wanted to chime in on the partial hysterectomy -- I don't know if you are planning on having more children, but if this is a path you might consider, I have to say I feel SO MUCH BETTER after mine, and it's only been six weeks. They removed my uterus laparoscopically (I had a bunch of fibroids inside and outside the uterus, including one the size of an orange, and my uterus was the size of someone with a 15-week pregnancy). They left ovaries and cervix intact, so recovery time was minimal and I still produce hormones and will go through natural menopause -- I just don't have to visit the feminine hygiene aisle in Target anymore! </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973410 Mon, 08 Jul 2013 16:04:33 +0000 Transcona Shannon 973410@https://youlookfab.com/welookfab/ <p>Rae - you've already received some excellent advice here but wanted to add that there is also the option of endometrial ablation, where they use heat to burn off the endometrial lining. It does result in permanent infertility but leaves all your organs intact. I know several women who have had great success with this procedure. This doesn't help for fibroids though.</p> <p>I'm so sorry you are suffering with this. The discomfort/pain is unbelievable, I know. Sending HUGS </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973266 Mon, 08 Jul 2013 13:16:55 +0000 Kristin L 973266@https://youlookfab.com/welookfab/ <p>I can't give any advice, but I'm sending big hugs your way!&nbsp;</p> <p>My mom had a partial hysterectomy back in the early 90s and, to my knowledge, never when on hormone therapy. Granted, she had the partial for other reasons, but she still produced hormones. The only thing she told me that was a little odd about it was that she had to count her days a little more carefully. And the only reason she did that was just so she could figure out why she was getting cranky sometimes or eating everything that wasn't nailed down.&nbsp; </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973252 Mon, 08 Jul 2013 13:01:30 +0000 Suz 973252@https://youlookfab.com/welookfab/ <p>Oh, yeah...the lower back pain....</p> <p>I seriously hope there is a solution to it.&nbsp;</p> <p>If worst comes to worst, the partial hysterectomy (where they leave your ovaries) has really worked for many of my friends and they don't have to take HRT at all. And they feel much better. If I had not been trying to get pregnant for so long I might have gone ahead with that.&nbsp; </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-973003 Mon, 08 Jul 2013 02:45:13 +0000 Krista 973003@https://youlookfab.com/welookfab/ <p>Hi Raisin,<br /> I have similar symptoms and I have tried a few things for relief over the years. I did try BC for a few years but stopped because of headaches and other issues not suitable for discussion on the forum! Then I tried a gluten-free, dairy-free diet which helped a bit but has proven to be a challenge to stick with, so I hear what you are saying about elimination diets! I'm now trying an abdominal massage technique which is apparently quite helpful, but I've just started, so the jury is still out. If you have benefits coverage for massage through work and there is a Practitioner in your area, this might be something of value for you. This is my practitioner's website - maybe there is something similar where you are: <a href="http://www.mayatherapyinottawa.com" rel="nofollow">http://www.mayatherapyinottawa.com</a></p> <p>Other than that, I can only offer hugs. It's a lifelong issue and I, too, sometimes just live with the pain and discomfort. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-972985 Mon, 08 Jul 2013 02:30:08 +0000 Janet 972985@https://youlookfab.com/welookfab/ <p>Have you been to the OB/GYN lately? I am wondering if you might have fibroids as well as the endo. It sounds like some similarities to what I was experiencing prior to my recent surgery.</p> <p>Hugs to you. I wish I had more advice. My mom had endo (she was told she would likely never have another child, but 9 years after my sister was born, mom got pregnant with me!), but of course treatments 40+ years ago -- or even when your mom was diagnosed -- are not as good as what is available now. Still, I know this must be tough. My thoughts are with you! </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-972942 Mon, 08 Jul 2013 01:55:47 +0000 Raisin 972942@https://youlookfab.com/welookfab/ <p>Thanks Suz for the insight. So I guess menopause is the salvation, huh? Lol, at least I will look forward to it!</p> <p>So I was laughing a bit at your post. Isn't it so true we sort of just live with the discomfort and don't realize how bad it's gotten? I know mine has gotten bad very gradually and I can't believe I ignored it for so long. Funny story, my OB says to me, "So, do you have pain during intercourse." And I'm like "no". Because a) I've been ignoring things and b) I guess I took him a little too literally as in "during" only. So next time I told him, well there's no pain "during" but it feels like my uterus is super swollen and on fire for 1-2 days after. But that's normal right? Lol, he just gave me that look and was line, "no, no it's not.". Oh, ok, just me I guess! Haha! </p> <p>Anyway, it's a great description. The pain really does creep up on you. I have a lot of lower back pain and that feeling like my pelvis/ uterus is on fire a lot. Not like on fire like a UTI but like someone is poking me with a hot poker and like it's super swollen. Inflammation indeed, I guess. </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-972930 Mon, 08 Jul 2013 01:42:25 +0000 Suz 972930@https://youlookfab.com/welookfab/ <p>Oh, Raisin. HUGS!! Endo can be so painful.&nbsp;</p> <p>I had it, and had it badly, it turned out -- but I didn't know it. I mean, it crept up on me slowly, over a period of years, and&nbsp;I just sort of adjusted to the pain over time and began to think it was "normal" to be completely out of commission for several&nbsp;days every month. Oh, and I had fibroids, too, so I was also chronically anemic (despite efforts to deal with that). And I was infertile. I had the laparoscopy and they dealt with one fibroid and the endo. I still didn't get pregnant (despite the endo and fibroids, they never really felt sure about the cause), but it did help with the other symptoms for at least a year.&nbsp;</p> <p>I have no solutions. I ended up doing nothing more, and simply living with it. It never seemed as bad after the surgery, even though it did recur. So that was some relief. And there is a time limit to it, fortunately. That's years away for you, though, and I understand that you don't want to end up in your mother's position.&nbsp;</p> <p>I would continue your research and thinking on it. It's possible that you'll get to the root of it or at minimum, find a way to keep the symptoms bearable.&nbsp; </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-972902 Mon, 08 Jul 2013 01:17:07 +0000 Raisin 972902@https://youlookfab.com/welookfab/ <p>Thanks. Yah I'm not too sure I could even do a juice fast, lol, I likes me food! But you know, if it seemed like a good shot I could be convinced. I'm not going to try anything though before asking my OB. I am hoping he will know of some things to try that don't involve major surgery or chemical menopause.</p> <p>Darn, Kale and Strawberries are bad? I guess is should take the Kale out of my salad and slow down on the strawberries. Boo </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-972899 Mon, 08 Jul 2013 01:14:14 +0000 Jenava 972899@https://youlookfab.com/welookfab/ <p>I just wanted to chip in this: &nbsp;Be careful with juice fasts if you are hypothyroid. &nbsp;Eating some types of raw veggies and fruit can make it worse (kale, spinach, strawberries are some that are often in these types of juice fasts).</p> <p>I am currently waiting for lab results of testing for hypothyrodism, so I've been reading up on that - it may also be an auto-immune disease. &nbsp;I guess with these things - especially those that mainly effect women - there just isn't much real research! &nbsp;Damn patriarchy.</p> <p>Sorry, I have no other advice for you on the situation, but thought I'd at least add that.</p> <p> </p> https://youlookfab.com/welookfab/topic/endometriosis-any-wisdom#post-972886 Mon, 08 Jul 2013 01:01:20 +0000 Raisin 972886@https://youlookfab.com/welookfab/ <p>While trying for 2 years to conceive my second DS (a bit of a shock, since my first DS was no problem to conceive) &nbsp;I found out that I had endometriosis. &nbsp;It was a last ditch effort, I had a laparoscopy done, the doctor found what he described as "mild" endo, and removed it. &nbsp;I got pregnant 6 weeks later.</p> <p>So, now a year after having my second DS I find my endo symptoms getting increasingly bad. &nbsp;I would say I didn't really know I had it at first, but for about 4 months before we did the lap, I was sure I had it due to sudden symptoms that I had never had during my very regular and previously predictable cycles.</p> <p>Now I'm on birth control again. &nbsp;I don't like it, I find it gives me headaches, and I often think I am still ovulating, which my OB agrees with. &nbsp;He's already given me stronger BC, but it gives me more headaches.</p> <p>I would really like to discontinue the BC because the headaches alone are enough to make me want to stop taking it. &nbsp;I've heard though that it helps in preventing the endo from growing. &nbsp;I don't really know how though, as isn't endo estrogen dependant, so why would pumping estrogen into me help?&nbsp;</p> <p>Now I know there are things you can do like get certain shots that basically put you into chemical menopause for a bit? &nbsp;Or worse come to worse get a hysterectomy. &nbsp;My mom happened to have fibroids badly when she was younger and had a full hysterectomy at 30 or 31, and was then on hormone replacement, and that did not go well for her. &nbsp;The hormones made her sick, get headaches, not to mention a ton of weight gain. &nbsp;So, obviously, I'd love to avoid that.</p> <p>I guess I'm looking for a more natural remedy. &nbsp;I have read that there is some evidence that it may be an autoimmune disease. &nbsp;I know it's not well understood why it occurs, but I guess it's linked to other autoimmune diseases, and as it just so happens I am hypothyroid and have been medicated for it for about 6 years now. &nbsp;</p> <p>I've read a bit about elimination diets which means basically I'd have to eliminate all foods that could cause inflammation like dairy, sugar, nuts, eggs, nightshades, etc. &nbsp;I've also read more dramatic things like people doing juice fasts and stuff to cure it. &nbsp;But supposedly these "cures" have to do with the fact that they eliminate inflammation in the body and help with autoimmune diseases. &nbsp;</p> <p>Ugh, I think I'm just depressed about the long term implications of it. &nbsp;Knowing that it's maybe mild to moderate at the moment, and already feeling some degree of pain from it for 14 days or more per cycle, I'm pretty discouraged to think of what it could be like a few years or more down the road. &nbsp;</p> <p>Any wisdom, advice or otherwise? &nbsp;I know some of these "solutions" seem extreme, but I wonder if any are worth a shot for my long term comfort and to avoid any major surgery or otherwise. &nbsp; </p> <p></p> <p>ETA - Sorry this post is kinda all over the place. &nbsp;I've been reading too much and my thoughts are kind of scattered. &nbsp;If you sort it out and respond, thanks!</p>