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Can endo cause pain even after your period?
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Can endo cause pain even after your period?

I have been in lots of pain that I usually get with my period. I have always gotten bad pains even without being on my period they are just worse now.  Not so bad at this very moment.  I am going to speak with my Dr about an exploratory lap surgery for possible endorsement but I was wondering if endorsement can cause pain even without having your period?
I've been suffering for about 16 years and can't stand being in my own skin anymore. Hopefully I will have an answer from my drs at some point as to what's been wrong with me.  Thank you to anyone who responds.
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Avatar_f_tn
It can cause pain between periods, because your body is not designed to have all of that extra stuff inside it.  I will tell you right now that if I wasn't in pain between periods I would not be here posting on this forum right now, because I'd be dead.
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1872071_tn?1320291132
Its so painful.  It felt like my right ovary was ready to pop out of me! And this rectal discomfort *****.  When I have my period I get stabbing pains where I cannot even sit half the time. Oh and the bathroom issues! God I can't wait for answers!!!
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1872071_tn?1320291132
I didn't curse badly (only said sux) but it seems as though its been censored lol
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1872071_tn?1320291132
And also let me apologize for the misspelling of endometriosis.  I am on my phone and it tends to spell what it wants at times lol auto words.  Guess I have to stop abbreviating.
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Avatar_f_tn
It sounds like you do have endometriosis.  If you have any further questions I would be happy to answer them.
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Avatar_f_tn
I had a laparotomy and a laparoscopy following scar tissue removal behind my old ceserean scar and adhesions after having 2 lovely children by cesarean. The pain started 9 yrs after my first child. My period would come and go without a hitch but then the pain and swelling would start and continue for nearly 2 weeks after day 1 of my period. It's been a week since the op. I am black and blue, swollen and feeling very sorry for myself. The post op pain has been unbearable but had an hour out today and it was clearly too much. I am walking like a pregnant duck and feel like I've been kicked. That said, I am on the mend but sense this will be a slow recovery. Pain relief helps a lot. Does anyone know how to help the swelling to ease along my  laparotomy? It feels big and heavy and is still sore.
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Avatar_n_tn
Be sure to find an endo specialist. A general ob/gyn does not know enough. If you are in the US you can find one by contacting the endo assoc:
http://www.endometriosisassn.org/

I hope this helps,
achilles2

PS If they do an exploratory lap I hope that also includes removing any endo found. Some doctors look, say yep, then close up and then schedule for another surgery. (Last I checked most endo specialist will not do this because they know it increases the chance of adhesions.)
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1648058_tn?1330930902
for me YES it can cause pain on and off ur period. i just got the lap in aug this yr. i have MORE pain on my period now,but still about as much without it. at this point im hoping i havent done all my healing yet,and i can feel much more relief! its so bad ive only had sex with hubby twice (painful) since surgery :(
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1872071_tn?1320291132
Thank you everyone for your responses.  My Dr seems to think my pain is due to anxiety.  I am close to giving up and just accepting the fact that perhaps I am just supposed to be in pain.  So frustrating.
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Avatar_n_tn
My experience has been that when the doctor no longer listens and tries to blame everything on stress or anxiety it is time to find a new doctor. Did the doctor try prescribe meds if so which one because if it is an SSNRI like cymbalta that will make everything worse by making you addicted and destroying your adrenals.

If you are in the States you can contact the endo assoc to find a good doctor near you.

Also even if you do have anxiety that does not give the doctor a reason to ignore your health problems. You might want to find a good health psychologist who can "be in your corner" and help you deal with the pain and dumb doctors.
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1872071_tn?1320291132
My Dr prescribed zoloft and my obgyn gave me a BC pill but I am working on quitting smoking.  The obgyn said its not good to smoke and be on the pill. I am hoping the antidepressant takes the edge off my anxiety during my cycles but its a very low dose.  I have been labeled as many things - bipolar, manic and multiple personalities all by people who have not observed Neice long enough to make those kinds of diagnosis.  My mistake was having too hard of a time by losing multiple loved ones to illness and such.  
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Observed me* darn phone lol.
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1872071_tn?1320291132
I got my period when I was ten and was bed ridden for the week I had it.  The pain was unbearable and the flow was heavy.  When I was 14 I was hospitalized foe left lower quadrant pain.  I had a CT scan and ultrasound and they could not find the cause.  At first they thought it could be my appendix but it wasnt.  So they had a child psychologist talk to me during my stay.  I guess to check my head.
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Avatar_n_tn
Losing loved ones is always hard have you ever seen Elizabeth Kubler Ross's description of grief? It is excellent (Of course since we are human there is no linear progression through the stages you can be in many stages at once or go back and forth between stages. The point is grieving is normal and has stages to it.

http://www.businessballs.com/elisabeth_kubler_ross_five_stages_of_grief.htm
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1872071_tn?1320291132
Ok I guess I have suffered more than 16 years due to my period.  Well Achilles ty :) and yes I have seen it but would love looking at it again.  What happened to Neice was that.I started out in therapy at 16 to just talk about random things then 2 years later a parent died and I held in my feelings for months then it came out in one big boom and I needed to be in the hospital.  After that I was on so many meds I had a permanantly glazed look in my eyes. I am not soonish nearly as many now but do still have a hard time with self expression. For the most part I know my loved ones are out of pain and I am soooooo happy they are not suffering.  But all that aside I have very harsh periods and a long medical record. The only one who suggested I may have endo by studying my medical records was an er dr. However he did not give me many suggestions as to what to do. I wish I could find an endo specialist in my area.  I will try th!t endo website you gave.
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Avatar_n_tn
I sent you a message.
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Avatar_f_tn
Endo can cause pain on and off your period.  I can be persistent, intermittent, and range in all levels of severity.  My pain is worse around ovulation and my period, but it is always there along with fatigue.  Yes you may have anxiety, but that is not causing the pain, rather a result of the pain.  I get anxious when my pain starts to ramp up. I start thinking, is it gonna get worse?, where is it going to happen?, this especially makes me anxious when I'm at work because I don't want to have an episode at work, then I think, if it does, how will I get home?  I really have to make myself relax, but sometimes it's not that easy.  

Do some research on diet changes, specifically gluten free/wheat free, avoid soy, dairy, caffeine, alcohol, and fatty foods.  All of these either cause inflammation, something you want to avoid with endometriosis, and/or increase the pain response within the body.  I just started it last week, in full force, been trying to cut out stuff for a month.  Already I am feeling a bit better. The pain is still there, but not as intense. And while I get fatigued, it's not as debilitating.

If your doc is racking up all your symptoms to anxiety, get a new doctor.  Don't waste time on someone who doesn't listen, it's your body and only you truly know how you feel.  No two people with endo experience it the same, and the level of the disease does not always correspond to the level of pain one feels. There is a woman who has a website that has lots of good info http://www.****.com/.

I hope this helps.
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Avatar_f_tn
Hi I read your post & thought I would respond.
I am so sorry about your pain (HUGS).
I am also 30 yrs old. I was diagnosed with endometriosis in 2006, I was devistated to find out I had endometriosis. I had no idea what it was.
Due to I think stage 4 endo, I finally needed to have my remaining left tube & left ovary removed.

I used to have continuous pain due to cysts on the ovary (the pain was there like all the time). A couple times I had a cyst rupture (very painful); the ruptured cyst was found with my laparoscopy.
I'm not sure if you have a cyst? that could maybe be a possible cause?

Lets see... I have pain with & without my period. I have pain prior to having a bowel movement. My pain will also come & go, without having a bowel movement.
I've had 2 colonoscopies done to rule out other issues (those were normal).
Honestly I'm thinking everything is related to endometriosis.

I had an appt. with My ob/gyn, I told him about my stomach pain he cannot think of anything. He's gone in 4x's already. So he wants to refer me to another dr. for a 2nd opinion.  




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Avatar_f_tn
I am sorry to hear about your laparotomy. When did you have it done?
Lets see... I had a laparotomy done in 2006, That was so painful afterwards.  my stomach now (above the pubic area & below the belly button) is still a little swollen & seems numb. the scar formed into a keloid scar, I'm pretty sure I have adhesions as well. Which I had lysis of adhesions done, I'm pretty sure they have formed again.

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Avatar_f_tn
I just wanted to add that since being a part of these forums (and it hasn't been that many), I feel a bit of emotional relief knowing that other women understand exactly how I feel.  I don't feel so alone.  There's a big difference talking to people who KNOW what I am going through.  I think there is this perception from other people that since we look ok on the outside and we push through agony to live as normal lives as possible, that what we say we are feeling is not the truth, or that we are just "delicate" and can't handle a bit of cramps.  At least here and other groups I've recently become a part of, I know I won't be judged, or feel like I'm just complaining about "a little" pain. I think you, my fellow endo women are some tough ladies, and some of the kindest and compassionate people I've encountered. Keep spreading the love and compassion, it is really needed among our community.
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Ok Achilles ty I will go look. And ty bobbin and everyone else for the support. I was told I should have a coloniscopy as well but my dr says they wont find anything. Well I am going to have am at some point but I'm hoping for some answers as to my on and off again tectal pain.  It ALWAYS happens when I have my period.  Also to whoever mentioned cysts yes I had 3 in less than a year and also 2 uterine fibroids which my obgyn and pcp says is NORMAL.  I know that while not uncommon they are not necessarily normal either. She put me on an AD due to anxiety and I feel Luke its making Neice gain a little weight.  Instead of being too thin and miserable she wants me to be fat and a wreck lol.  I can't stand the bloating but its a very low dose - 12.5 mg.  So idk if thats what's causing the bloating.
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Ok Achilles ty I will go look. And ty bobbin and everyone else for the support. I was told I should have a coloniscopy as well but my dr says they wont find anything. Well I am going to have am at some point but I'm hoping for some answers as to my on and off again tectal pain.  It ALWAYS happens when I have my period.  Also to whoever mentioned cysts yes I had 3 in less than a year and also 2 uterine fibroids which my obgyn and pcp says is NORMAL.  I know that while not uncommon they are not necessarily normal either. She put me on an AD due to anxiety and I feel Luke its making me gain a little weight.  Instead of being too thin and miserable she wants me to be fat and a wreck lol.  I can't stand the bloating but its a very low dose - 12.5 mg.  So idk if thats what's causing the bloating.
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Avatar_n_tn
THAT IS NOT NORMAL-- FIND SOME NEW DOCTORS!!!
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Avatar_f_tn
I have endo and have alot of abdominal pain.  can you describe your abdominal pain and what has been the outcome?
Thanks
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Avatar_f_tn
pain after your period may not be normal but its experienced with alot of people with endometriosis , its common
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Avatar_f_tn
Hi I saw this forum by searching the same expi rience, I was also in severe pain after my period especialy in my incisional area in ceasarian operation, and blood is coming out in my incision every after menstruation, I was diagnose of having endometriosis for the last 7years but this year was worst.. My doc say that the endometriosis find its way out in my incision thats why I bleed in my incision especially after my period its really worst pain and kinda have bloating.  I cant walk or move side by side canot sit and stand for a long time thats why I just relax in my bed for 2-3 weeks. Only one week is unpainful and can do activities.
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Avatar_n_tn
Can really really bad endometriosis be cured
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Avatar_f_tn
My endo first started out only be painful for a few days in the middle of my period.  unfortunately it started the last throughout my entire menstration cycle and then I started getting terrible pain during ovulation too and then slowly over time I started to get pains a few days before menstruation and ovulation and a few days after. I didn't have very many days of the month that werent full of umbearable.pain, upset stomach problems and bladder problems. Since my pregnancy temporarily cured the endo Im now at the stage where I have pains during menstration amd ovulation I rue the day it starts hurting nearly every day again v.v good luck to.you!
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Avatar_f_tn
I just read what you have written and it's as if I wrote it myself! It's so hard when people dont know how you feel and like you said just because we seem ok on the outside, we are not! I'm so glad I found this site because we all know what's it's really like to live with this pain!
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Avatar_f_tn
I had terrible endo for 26 years. Burning, heaviness, pain! I read Dr. Lee's book, What Your Doctor Won't Tell You about Menopause, which has a section on Endo. I started using Progest E, high dose progesterone in Vitamin E oil you rub on your gums, from Vitamin Express. In two months, surgeon could see implants dying off during lap surgery. In five months, pain 80% better. At 8 mos, no pain, heaviness or burning. Like I oiled a badly working machine that now works. Been in remission for 6+ years. Over time, I was able to use less Progesterone.

Good luck. No one should suffer like we have to do. Diagnosis: Estrogen dominant no more!
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Avatar_f_tn
I had terrible endo for 26 years. Burning, heaviness, pain! I read Dr. Lee's book, What Your Doctor Won't Tell You about Menopause, which has a section on Endo. I started using Progest E, high dose progesterone in Vitamin E oil you rub on your gums, from Vitamin Express. In two months, surgeon could see implants dying off during lap surgery. In five months, pain 80% better. At 8 mos, no pain, heaviness or burning. Like I oiled a badly working machine that now works. Been in remission for 6+ years. Over time, I was able to use less Progesterone.

Good luck. No one should suffer like we have to do. Diagnosis: Estrogen dominant no more!
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Avatar_f_tn
Oh my lord!!! I'm crying but in a weird way relieved right now that I found this. I have been suffering with this disease for years and I thought I was just a whiney, complaining baby! I had no idea that the chronic pain I've been having could all be related to this horrid disease. Thank you all for sharing your story, I pray I can get this misery under control.
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