Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
I want your thoughts ladies about my situation. I constantly contemplate but I just don't know..I have an amaing close friend in Rebel7 who I chat to daily which is just SO helpful, now I am calling for all my endo sisters opinion!
Most of you know my history...for those newbies;
Periods at 9, extremely heavy +clotting badly, can last up to 14 days, never on time, pain pain +++++, fatigue ++++, Anemia. I have tried all medications but Lupron due to Depo provera giving me osteoporosis so Lupron isn't going to be great on my body in that RE (it's called something else over here), and Femera you've all mentioned but again I havn't heard of it being used in Australia.
2 Surgeries this year I went from superficial/minimal to Moderate/severe in 4.5 months and my last surgery (excision) was in July and I am now feeling it horribly and this has progressed since about August.
I feel all the old stuff + pulling, my vagina throbs and aches ALOT more than before, I now find myself attaching my heat pack on my vagina as well. I am of course back on my specalist OBGYN's office, I have tried naturopathy, I have had a colonoscopy and he thinks I could have mild IBS but no bowel disease he thinks it's my endo, he has taken biopsies and I'll get those results when I visit my OBGYN again. My GP thinks my endo is affecting my nerve in my back siatic (?) nerve...my tramadol does almost nothing..and my body is exhausted all the time. By the end of the day I feel like I've done a days worth of hard work. Now, I eat healthy, I also attempt 2 small walks a day for my health (when I can) this only causes more pain but everyone tells me it's what should be done! It's only around the circuit I live on but it's better than nothing!! I attempt doing some yoga too if I find going out for a walk is too hard..it's hurting alot..pulling etc.
My question is, what do I do now? whats going on?
I can't keep doing this (I'm sure everyone knows what I'm talking about). This year alone I've gone downhill rapidly and badly. I assume with the endo worsening?? who knows. But I have no options I feel left. I want children so I am stuck between a rock and a hard place...We know we will have to try sooner then expected, I want my degree finished first so if I can work even casually I can do so...I don't know anymore..the ????? are always in my head.
Any advice or ideas ladies?
My Specialist is really trying..but I think he is wanting to put off surgery #3 this year..he just looked at me and said "it can't come back that quickly after that type of surgery, it, it just can't" - really? can't it? I can note quite a few women who it has! he just put his head down and shook it. I'm just one of those odd cases to him I guess.
So thanks in advance for any thoughts.
Sending good days to you all!
xoxo
Most of you know my history...for those newbies;
Periods at 9, extremely heavy +clotting badly, can last up to 14 days, never on time, pain pain +++++, fatigue ++++, Anemia. I have tried all medications but Lupron due to Depo provera giving me osteoporosis so Lupron isn't going to be great on my body in that RE (it's called something else over here), and Femera you've all mentioned but again I havn't heard of it being used in Australia.
2 Surgeries this year I went from superficial/minimal to Moderate/severe in 4.5 months and my last surgery (excision) was in July and I am now feeling it horribly and this has progressed since about August.
I feel all the old stuff + pulling, my vagina throbs and aches ALOT more than before, I now find myself attaching my heat pack on my vagina as well. I am of course back on my specalist OBGYN's office, I have tried naturopathy, I have had a colonoscopy and he thinks I could have mild IBS but no bowel disease he thinks it's my endo, he has taken biopsies and I'll get those results when I visit my OBGYN again. My GP thinks my endo is affecting my nerve in my back siatic (?) nerve...my tramadol does almost nothing..and my body is exhausted all the time. By the end of the day I feel like I've done a days worth of hard work. Now, I eat healthy, I also attempt 2 small walks a day for my health (when I can) this only causes more pain but everyone tells me it's what should be done! It's only around the circuit I live on but it's better than nothing!! I attempt doing some yoga too if I find going out for a walk is too hard..it's hurting alot..pulling etc.
My question is, what do I do now? whats going on?
I can't keep doing this (I'm sure everyone knows what I'm talking about). This year alone I've gone downhill rapidly and badly. I assume with the endo worsening?? who knows. But I have no options I feel left. I want children so I am stuck between a rock and a hard place...We know we will have to try sooner then expected, I want my degree finished first so if I can work even casually I can do so...I don't know anymore..the ????? are always in my head.
Any advice or ideas ladies?
My Specialist is really trying..but I think he is wanting to put off surgery #3 this year..he just looked at me and said "it can't come back that quickly after that type of surgery, it, it just can't" - really? can't it? I can note quite a few women who it has! he just put his head down and shook it. I'm just one of those odd cases to him I guess.
So thanks in advance for any thoughts.
Sending good days to you all!
xoxo
feel better
No going to the US is not a choice...it'd cost to much to get there + accomodation and since Im not even a citizen over there I'll have NO insurance..everything will be out of pocket...and you guys pay a MINT compared to us... we also seem to have higher doctors, everyone I've spoken to over there doesn't know what a professor is =S he is above the specialist GYNO...he costs a little bit but is worth it...
The professor said while acupuncture helps some women it's not a treatment option. But I might look into it anyway..what have Igot to lose, right?
Thanks for your help hun,
*huggggsss* hope you feel better soon xoxo
Did your doc use an adhesion barrier when he did your last surgery? It might be worth mentioning to your doc to try after your next surgery. Also mention the second-look lap....it sounds horrible, but might be necessary in your case.
I would insist on another lap ASAP. There is no reason to delay it and make you suffer. Adhesions will not respond to hormonal therapy (it doesn't sound like that's an option for you anyway).
I am so sorry you are suffering right now. I wish I could give you a big hug. You are just way too young to be dealing with this crap!
Jenny
I go back on the 23rd of November...I wonder whats next? I kind of want another surgery just to see if it is in fact back...I don't think he used the adhesion barriers just due to the fact he never mentioned it.
I'll let you know about the appt. on the 23rd.. thanks for your advice and info, I appreciate it no end!
*many hugs* and love!!
xxo
Tiffany
I have a similar history, periods at 10 two weeks on, two off, drug therapy and laps haven't worked...
That pain in your vagina though - get yourself to a womens health physio!! You likely have pelvic floor dysfunction (VERY common in women with chronic pelvic pain) I never knew just how much of my pain was caused by this!!! I was ALWAYS told it was my endo - but it wasn't! Only after birthing my daughter did they realise something was wrong, as my pelvic floor muscles were too toned after a vaginal birth! The physio is amazing, sex is less painful, periods are less painful, in fact everything from a full bladder to exercising is less painful!!
The other things I have found AMAZING are - natural progesterone (NOT synthetics like you have tried, they make me a complete mess and don't help at all) which is fantastic for so many things, the PMS symptoms, length of periods, pain (cramping), bloating, nausea and vomiting, it just helps so much with everything!
The other is the brand Metagenics. I use Gyno Clear (which I started on) and EstroFactors. The results have been absolutely brilliant!! I had a period last only TWO DAYS!!!!! Never happened before :) Now they are around 2-3 days of cramping and heavy loss, then it is all over! It is so good!!
I also didn't have relief on Tramadol (also allergic to morphine, so the reactions were quite scary too) and I birthed without pain meds, and honestly would rather labour once a month than endo so I do sympathise with your pain. I also mention this because I would have never expected such lifechanging results from the treatments I am now using after being labelled as "too difficult" for the endo specialists to treat.... I found relief with my fertility specialist who has a vast knowledge of endo. And my chiropractor is amazing! :) Hope this helps, worth a shot even if it doesn't work because you should see improvement within a cycle or two. Quick to know, and fantastic results if they help!!!
As for trying sooner rather than later - it is NO LONGER taught that endo women need to try sooner, because they CAN raise your fertility level to that of your healthy peers. Be careful of speaking to older ob/gyns who are unaware, and old information on the net. Take care honey x
I found the relief I have now by starting all those therapies after my son was delivered. Give it a shot! xx
Thanks Tiff for you thoughts =) *hugs*
and Brooke you know you're my angel! =) Love you *hugs*
Be well!
Ahhh the EstroFactors will only work for me in combo with the Gyno Clear (Gyno Clear was my initial Metagenics buy) so will not work alone, but works in a combo for me. Could be why you didn't get relief from it. The herbs are meant to work together.
Cannot stress enough the physiotherapy for the vaginal pain, even when you are still in agony with endo, just having your vagina and all that area back to normal makes you feel so much better and much more fulfilled as a woman. Best thing I have done in years :)
Another option before hysterectomy is PSN or LUNA (presacral neurectomy or laparoscopic uterine nerval ablation) and also endometrial ablation (burning the lining of the uterus so you get no more periods or only slight bleeding - however you CANNOT risk falling pregnant after this procedure so usually only done on women who are sterile). Both have fantastic results for some people, worth a look into. I was offered the nerval ablation when I was younger, and I think I may do it if I ever get back to what I was (but so far I am better than I EVER have been since I was 10!!!)
I know the frustration I went through, and it is awful honey. We are here to support you in any way we can xx
I am about to go write down and google search a lot of what ruth86 has mentioned. I love my gyn (currently) lol, mainly because he actually knows about endo..he is the gyn my professor who is world renowned and in world conferencs for working to find a cure for endo and all associated with it, he is also apart of the endometriosis clinic set up here. So for now, I am happy I am in the right hands. I had a good talk to my boyfriends step mum the other night, she had a hysterectomy for endo at 40+ but she told me the doctor wont offer it, too many are getting sued because it isn't working for endo pain. She is lucky it has done wonders for her, but she said she went in begging for it...My professor also said Pregnanacy nd Hysterectomy's arn't offered by most doctors up to date with endo knowledge as it's been proven to not be a cure, so he is in the know. I also know there are various reasons for why it IS done too and so does he. Don't get me wrong I dont want it.. but I don't know other options, I'd much rather try the options ruth86 has noted, atleast then I get to keep my woman bits!! I think I don't no correct me if I'm wrong, I just don't know much because I am so young. I do ALOT of research, but its only through you ladies that I know what works and what doesn't. That and we know of 1 confirmed case and one possible case of endo in our family other than me that have both resulted in hysterectomy's...so I can't see them offering much help even if I did speak to them other than a hysterectomy. Even my parents god love them, who are deffinantely NOT tech smart so can't do much research believe that it's inevitable for a hysterectomy. I just feel lost alot, so thankful for you ladies!!
*big hugs*
xoxo
xx