- 7 years ago
- Wedding: March 2013
@traveller: I have endo. I was dx a few years ago when I found out i had a very large endometrioma on my ovary which I had a lap to remove and had to do it again recently for the same thing. When I had these large endometriomas it was so painful around ovulation and my period. It has been much better since surgery. MY DH and I are TTC now, so far no luck but trying to keep hopeful but my magic 6 month window after surgery when you are most fertile is slipping away! Endometrosis is really a terrible thing to live with. :/
Just a piece of advice for all of you suffering from endometriosis. I have had a severe case of it since I was 19. Since then, I have had 13 laparoscopies and finally a hysterectomy. Now, due to all of the surgeries, my pelvic muscles have been so traumatized and I now have pelvic floor dysfunction. It is HORRIBLE. My muscles are constantly tense and I have this deep aching pain which worsens if I am standing a lot. When my pain continued after my hysterectomy (which I had always been told would alleviate my pain – it was just a matter of me deciding that I was finished having children), my dr and others in his group were very unsympathetic. I was just given narcotics and otherwise ignored. When I finally went to a new gyn dr., she immediately commented on the number of surgeries and diagnosed me with interstitial cystitis and pelvic floor dysfunction. Apparently, there is some correlation between endo and IC. But once you have endo, it seems like all of your pelvic pain is assumed to be caused by it. That dr recommended that I see a urogynecologist. I made an appointment and, after hearing my history, he immediately told me how sorry he was that I had been subjected to that many surgeries. He also told me that I had pelvic floor dysfunction and confirmed my IC by subsequent tests and a scope of my bladder.
I hope this is not “thread jacking” but I just want to share my story with all of you who are having surgeries for your endometriosis. The actual surgeries are pretty minor compared to other abdominal procedures (like for instance my appendectomy which was way more painful and harder recovery) and provided me with temporary relief which I desperately needed at times BUT if I had known the damage they were causing to my pelvic muscles, I would not have had so many of them. No one ever told me that pelvic floor dysfunction was a possible side effect . My mission now is to make women aware of this so that they do not go through what I am now. Please know that I am not saying to not have any – I truly believe that I would not have become pregnant without have the surgeries right before trying to conceive. I just want to let people know about what can happen if too many procedures are performed.
FYI – just wanted to let all of you know that my doctor was not some goof ball who didn’t know what he was doing. He actually was one of the very first doctors to become an expert on endometriosis and to perform laser surgeries. He traveled all over the country during the late 80s/early 90s in order to teach other doctors. The problem is that he only focused on the success of the current surgical procedure and never considered any potential negative effects caused by multiple laparoscopic surgeries.
Sorry for any typos – tried to go back and edit some grammar mistakes but couldn’t get it to work. Guess that’s why I shouldn’t use my phone to draft such a long post!
Mrs stormy love – I appreciate your reply. Yep – 13 – not an exaggeration. I am now dealing with chronic pelvic pain. It has really hit me hard. I always thought that I would be pain free when I finally had a hysterectomy. Unfortunately, that has not been the case. My interstitial cystitis is worse because of the pelvic floor dysfunction. Normally, if your bladder has a spasm caused by IC or a UTI, the surrounding muscles engage to control the spasm. My muscles are in a constant state of being “engaged” so they don’t work properly when my spasms occur. Also, I have a constant, aching pain from my pelvic muscles. Worsens when standing or sitting – makes it difficult to run errands. I have to be on pain management which is AWFUL. It makes it very hard to function on a normal basis. So, I can’t take the prescribed dosage or I feel “cloudy” – which doesn’t work when reviewing contracts or trying to be a good mom. Luckily for me, I am a partner in my business and have very understanding partners. I work from home (for days at a time) when I need to, and as long as my clients are happy, no one cares.
I have been extremely blessed with having two children. My dr used to always tell me how hard it would be for me to have kids. I feel very lucky because I have heard many heartbreaking stories of women who have not been so lucky.
Sorry for a long reply to your question of how I am feeling – I’m just having one of my “bad” days.
I know this isn’t the right place but I’ve posted in the support forum and haven’t heard back – will someone please explain why when I hit “reply” under someone’s post, my reply does not begin with “@______________”. I just hit reply above but it wasn’t added so I just hit edit and added the user’s name. It hasn’t worked for any of my posts. Thank you.
I also have endometrisis. I’ve had pelvic pain since I was a young teenager and I’m now 37. I have taken probably every BCP out there, I’ve had 3 laps and 6 months of Lupron injections. I am 17 days away from my complete hysterectomy (ovaries, cervix, uterus, tubes, everything). In my previous relationship I was never able to have children despite many attempts with an infertility specialist. My partner and I are debating if we want to adopt or just be child free.
I would also like to echo the sentiment to be careful with how many laps you have. Besides causing other pelvic issues down the road it can also make it harder to get pregnant. My Dr’s warned me many times to be conservative with the # of laps because the more you have the more scar tissue you are creating.
I have endo. I’m 24 and was diagnosed with polycystic ovarian syndrome at 21, and endometriosis at 22. I’ve had 2 laps so far. One was Feb. 2012 (when they confirmed my gyn’s predictions) and the other was June 2013 when they had to remove the right ovary because of a softball-sized cyst.
Treatment wise, I’m on BCP continuously (only get periods 2-3 times a year), Norco/Vicodin for pain and I’m starting pelvic floor physical therapy tomorrow to try and get my myofacial pain under control. It’s really hard to be facing this, and I’m so thankful for my family and their understanding. I couldn’t do it without them.
My gyn has been amazing to work with. She knew that I needed to see someone else to try and get another opinion on what treatment to follow because all she knew of was Lupron, but I refuse to take that and she honestly didn’t like the idea of giving it to me. I went to University of Michigan’s Pelvic Pain Clinic and saw Dr. Skinner. She’s amazing and seems to really know what she’s doing. She was the one to suggest the physical therapy and I’m hoping it makes a difference! I would love to be able to enjoy sexy times with DH and not be wincing because it hurts!
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