If you look at my previous posts you will see I've been sick with a huge list of symptoms the last 7months now. No one knows exactly what's wrong with me.
My worst symptom is living with constant nausea. But since becoming ill my period pain has become unbearable. If I don't take painkillers I will throw up from the pain.
When I was in the ER a gynocologist suggested I may have endometriosis, but didn't want to do a laparoscopy on me because its surgery. I took the pill she gave me for 3 weeks then stopped it because it made extremely ill. My doc told me never to go on the pill again because that's the 2nd time I tried and had a serious side effect (including heavy bleeding that sent me to hospital),
So my question is, can endometriosis cause nausea that happens persistently all month and is at its worst during my periods? I also get severe diarehha/constipation, cramps, dizziness and migraines.
YES YES YES!!! I had chronic nausea for over a year before I had my surgery. I was on the pill at that time too. The pill didnt help for the nausea at all. I also had severe migraines that I was hospitalized for as well. Since my surgery and being on the pill for 6 yrs I have only had 1 migraine so I truly believe my migraines are hormone related.
I would go find yourself a gyno that specializes in Endo and have a lap done to see if there is endo. That is the only 100% for sure method of knowing.
I lived in misery for years with all the symptoms I had, dont wait too long
Women who have Endometriosis should not be on birth control, although doctors will tell you it is OK. Birth control pills inhibit bleeding and this is a problem with Endo, because endo already has a problem getting rid of the menses in the proper way. With Endometriosis the sloughing off of the endometrial tissue is found outside of the Uterus (and often in the entire abdominal cavity and around the bowels). Which is where some of the pain occurs from. Other things that could be causing the pain are adhesions, fissures, adenomeiosis (thick uterus caused by Endo), and the like from endometriosis. Your able to see a GYN and have an internal ultra sound right there in the clinic office, to see if you have any cysts or other tissue overgrowth indicative of Endo.. More serious diagnosis may be suspected but don't be alarmed until or if you NEED to go further for a laperoscopy.
Remember, endometriosis is ESTROGEN dominant, and when you take birth control your doing more harm than good. Endo is an auto immune disorder too, it doesn't often recognize itself and can make its own body ill with something as simple as stress in ones life. Food for thought.
I am sorry but you are mistaken. The right bcp does not cause more harm than good. Not all women have invasive endometriosis so the pill is affective if taken continuously. It's when someone hasn't been diagnosed with the disease and they develop deep infiltrating Endometriosis is when it's not affective completely. There has not been enough research done on this disease to find out if you have Endo without doing a lap to see. The bcp is wonderful so use for people who's hormones are all over the place which is the case for many people with Endo. It's used to suppress the Endo. Yes it is estrogen dominant but a women needs estrogen as well. This disease is a catch 22 you are damned if you do and damned if you don't. If I wasn't on the pill for the last 7 yrs I might have killed myself. I am not saying that just to say it I really would have. I had a great surgeon but that was 15 years later. If I come of the pill I not only still get pain but mentally I am not okay because the pill keeps Amy hormones balanced
Rambo do you have endometriosis ? Just curious. I respect most of what your saying but I do not agree with your comment about he pill. Sorry.
Just an update for everyone, I'm doing a 3d ultrasound tomorrow after visiting a gynaecologist he suspects bowel endometriosis. He wants to do a laparoscopy, but I'm not keen on being opened up if he isn't 100% sure. Will a 3d ultrasound show bowel endometriosis? Of the any people they diagnose after laparoscopy, I'd like to know how many end up NOT having the disease? Does anyone have any knowledge about this please? Thank you!
I have heard people say that they for sure thought that they had it but when they had a lap they found nothing. It wont hurt to have a look to just to find out yes or no. I have found more that people have responded that yes they did have it more than no
Before my surgery I was told I had ibs for 15yrs I never believed that. No ultrasound or cat scan picked up on it. I posted a link on the Endo board of my story maybe read it over. I was misdiagnosed for 25yrs. Part II of the story they are posting about what they found during surgery. It might help
The scan came back and the doc didnt find anything except for one if my ovaries looking poly cystic. I used to have pcos about 4 yrs ago but then it 'went away' once I lost 17 kilos. So now that he's ruled out large endometriosis and the adhesions, I have to wonder whether I should do the laparoscopy to find out,.,,,
I have endometriosis and I feel your pain , from what ive heard and felt , yes its common to get nausea all the time , i take alot of gravol , or have it on me just in case because for me it comes in a flash , sounds like you most likely have endometriosis , perhaps seek help to be put on a birth control pill .
I got dianosed 9 months before my wedding with endo. I too have extreme nausea. It was so bad I did not want to leave the house. I thought people would think I had an eating disorder because I'm tall and thin. I have gotten some relief from zofran and acupuncture treatments. I also try preventive therapy with supplements. Good luck. I have been there...
Lana, I've had chronic migraines for years, nausea since the middle of last year and since my surgeries (also had a mirena inserted) its gone to vomiting, unable to keep anything down or no appetite at all. I seriously don't enjoy food, which is weird I've lost 20kg since September.
I tried yaz, microgyn 25, microgyn 35, microgyn 50, diane and a few others I can't think the names of (its 1:40am here) none of them helped.
I live with chronic pain (RSD) due to surgeries, you can read my story below called update after surgery.
Have you gone in for a lap? I see my new specialist on Friday to book surgery number 8 since May last year.
I was like you with BC as well, until my doctor put me on migrogestin FE 1.5. The higher of the dose works well for me. I have no side effects at all. I'm pretty amazed. No weight gain, no headaches, no depression. It does keep endometriosis at bay. They removed my left ovary, took my tubes and did an eblation. So I only take BC for hormones..ask your doc if you can try it. I was always sensitive...even to the point where I was severely depressed. Now I'm great! Good luck. It's all trial and error.
Hi there, sorry to hear what you've been through, as of today I've lost almost 20 kilos too. I
haven't had surgery yet, I am on a waiting list. I think my nausea def gets worse with the migraines, perhaps you should have a head scan & of your neck to make sure it's not something related to that? I am considering doing that myself. My gyno says he will put the mirena in during the surgery
Lena my advice is to find a specialist who will listen to you. My 15yr old has both endo and adenomyosis and has been through hell. No one believed she was even in pain. She is on microliter and there are no sugar pills so she has no period. She also has 2 more as in. Hope you get it all sorted soon!
Just found this looking for causes of constant nausea. I've had two endoscopies which ruled out pretty much everything related to the stomach although apparently I have gastritis. The nausea is constant and debilitating. I've been on a bcp for the past several years that I take everyday to prevent a period because I get very bad migraines with my period. I'm wondering if this could cause endo and should I see my gyno next? The gastroenterologist says I have ibs but I don't have any of the symptoms of that. Am at my wits end.
Hi there, I sympathise. I am the same. I suggest two things - get your stool checked for parasites. And secondly, if that's clear, have your hormones checked out and ask your doctor if you can be check for endometriosis. I am booked in for a laparoscopy in a month to check if I have it - after a year of trying to find out what's wrong.
My two endoscopies also were clear, but I also had a colonoscopy. I suggest you do the same. Hope I've been helpful.
Hi.. I struggled with terrible symptoms for almost a year. I went to 3 different gyns who did regular and transvaginal ultrasounds and told me I was 'fine' although I was bleeding more than 3 weeks out of the month, my waist was more than 12" bigger with no weight gain and the pain was so bad at mid cycle and during my period I couldn't function or work. The 4th doctor suggested laproscopic surgery and I agreed. I needed answers. My right ovary was encased with endometriosis and actually adhering it to the rear wall of my abdomen. Since then I have tried to minimize the recurrence by eating organic foods, free range beef, etc... So many foods have added hormones our bodies think are ours. Unfortunately there are a lot of things our bodies recognize as estrogen and it contributes to the growth of the endo. Soy is one of these 'pseudo estrogens'. There are some good books out there about estrogen dominance and I found it worthwhile to do what I could to minimize these aggravating factors since my sisters best friend has had 4 surgeries for endo and my cousin has had 3. I've only had the one so far but I hit peri menopause a year and a half ago and my symptoms are starting to return. I'm hoping and praying after menopause it will be the end of the endo for me although it seems that it can continue for some women even afterwards. The laproscopic surgery wasn't that bad and I was back to work after 4 or 5 days. It really wasn't that difficult of a recovery and the relief of the symptoms, and finally KNOWING what was going on was totally worth it.
Hi ticked, my nausea has improved somewhat, and my ibs - but once i ovulate until i reach my period the nausea gets much worse so now im convinced its hormonal related. After a year waiting for a laproscopy, i am booked in for 9 days. Never been so excited about surgery lol.
Hi there, thats terrible. My periods luckily dont go for that long but its really great that you found answers. I have eliminated soy a couple months ago and my nausea has improved so i totally agree with you. My surgery is in 9 days after a year of waiting and i cant wait. It must be such a relief knowing its not all in your head like doctors love to think. I am still in my 20s so unfortunately menapause is far away from me. I pray you feel better soon xx
Thank you all for your advice. I was diagnsed with endometriosis just yesterday and am now recovering from surgery. It was behind both ovaries & also at the back of my uterus towards my bowel. Hopefully the pain and nausea will dissappear.but only time will tell.
This past year has been hell but im optimistic things will get better now!
I'm scheduled to have laparoscopy along with embloization for fibroids on the 19th of this month for my endo. You seem to have a lot of knowledge about endo. Do you think it''s wise to have these procedures or just go head and remove the urterus? I'm so torn since Im only 35years old. I do not want anymore children I'm just scared. Now I'm experincing nausea and vomitting I can't eat anything without getting sick.
The problem with a hyster is that it will not solve the problem with Endo. If your surgeon isn't skilled and excise the Endo it can come back, in fact it can come back regardless just at a slower pace with excision. If you have ever had ovarian disease (Endometrioma) I just became aware that even that can grow back as its different cell of Endo. I always assumed that if you excised the disease it would give you substantial relief as well as being on a BCP of some sort. I know for me it has helped a lot but many women can't take the pill or any form of HRT. For me it was a life saver literally.
Is it possible you have adenomyosis? A lot of women who have Fibroids and Endo often have Adeno and you are the right age for it.
Have you tried to the Endo diet to elevate some of the Endo symptoms? It is hard but I found it to help a little with pain but not all.
In my opinion I would have the procedure done. I am not a doctor I am only a patient who has suffered for 23 yrs. I have sat on the fence about a hyst since I was 30 and in the end it goes back to a 50/50 chance and that is with having a good surgeon. However many have found relief.
Have you ever been tested for any type of gluten allergy or celiac? I was tested but it came back negative but was positive for Wheat, spelt and Dairy intolerance.
Right now I am fighting for surgery myself and it is for a hyster. I had a PSN done (Presacral Neurectomy) and I don't feel like it helped and they say that if that didn't help I could possibly have Adeno as well. The continuous BCP for me has helped I am on Marvelon.
What have you tried to suppress your period and ovulation? How many surgeries have you had? Have you always had fibroids or is that a new thing? When was your last surgery?
I had surgrey in 2007 I had to have my right ovary and tube removed. I had my first laposcopic surg in 2001. I was DX with endo right after I had my daughter in 1998. I wasn't able to take the depo shot becasue I lost 2 inches of hair with the first shot and I gained so much weight. I have several differant types of cancer in my family and I'm afraid of the BC because of the hormone. I never tried to supress my periods or my ovulation this would be my first attempt with the embolization to supress the bleeding. I only have the severe pain when I have my periods or a week before. I'm going to do some research on the Adeno to see if that may be what I have.
The fibroids are new for me. I had severe pain one particular day and I fell to the floor and I wasn't able to move. By me working in the hospital with my doctors I was able to call and ask for a ultrasound and thats how I found out. I'm one of those patients that try to be a proactive and tell the doctor what needs to be done. LOL :-). But with this situation I'm stuck and clueless. I will talk to the Dr before she preform my BX on monday.
haah no worries you are like me and that is a good thing. Most doctors and even ER doctors have no idea what Endo is and what problems could be because of it or the pain that it causes, so most of the time I need to educate them myself. Fibroids and Adeno def go hand in hand together. Did any of your ultrasound reports state that your uterus was enlarged? the only way to tell 100% if you have adeno is through a hyster unfortunately but the signs are there just like Endo. A good surgeon will know or have an idea.
The BCP has been my lifesaver and not just for Endo. It is the only thing that regulates my hormones however I have been breaking out like mad lately and that has not happened since I started them 7 yrs ago.
Make sure you get copies of your Ultrasound reports because they are very important to have because there have been times that they were looking at one thing and something else was detected but they ignore it because it has nothing to do with your complaint. For example I had an enlarged tube with blood around it. That was Endo however they had no idea in the ER so I was sent home. Brought that to the pain management clinic and I told her what it meant hahaha .. I am telling you most doctors don't have a clue about endo.
If interested not sure if you know about it or not there is a million woman march on March 13th 2013 all around the world but the big one is in DC. First one ever and we are going to be loud. So if interested look it up on Facebook to find a location close to you doing the march :)
Thanks you so much for the information! Finally I'm at ease I will look back at my ultrasound results and request my records from my previous gyn doc to see what the two can compare. I will look up the info for the march. Thanks again. I will keep you updated.
That's great please do :) I am everywhere online EndEndoForever so if you are looking for support from other Endosisters Twitter is a good place there are a ton. On here not many people come here just when they are looking for answers but there is a lot of support now on social networking.
Dr.Redwine can read your reports or photos on Endometropolis on Facebook he is a retired 30 yr veteran of this disease and he is there to answer questions he is amazing and you will get 100% facts from him which is what you want. There are too many watered down guesses about Endo so that is why so many Dr's and people are confused.
Omg your are a true blessing. I'm so serious I prayed for the right answers and you have given me more than enough insisght. Can you give me the exact website to get to the Dr. The physican I was seeing retired and I do not trust anyone else. I rpomise I will not bother you anymore after this.
Hey Lena. I might be too late on this post, but oh well. I have endometriosis and I cannot take an oral form of birth control. It made all my symptoms worse. However, I have been on depo provera, a birth control shot, for years and it has worked wonders!!! Just an idea. I don't know why it acts differently, but it definitely has been making life bearable.
Thank you, You are the 2nd person who suggested I try this instead of the pill. However I did my research and apparently it's the estrogen that causes all the problems with side effects etc. all the pills I tried in the past had higher doses of estrogen. I heard aleese is lower in estrogen. I plan on trying this for 3 months and if I don't feel better I will definitely try depo provera. Did you get any side effects? How is your pain levels?
My wife has suffered with Endo since her early 20's (in her late 40's now). She's had a hysterectomy 5 years ago, but the surgeon wasn't able to remove one of her ovaries that is adhered to her pelvic bone. The pain went away for some time but now it's back in full force, she now has new symptoms including vomiting, incontinence, occasional dizziness, and for awhile her abdomen was enlarged.
No doctor (including her previous ones) have found anything with multiple tests including MRI's, cancer, Upper and Lower GI, HADI Imaging of the bile duct and liver, Scan of abdomen and pelvis.
They won't do any exploratory surgery to find out the problem. We both think it's the Endo and that they aren't catching it in the scans.
We're out of options other than taking medication with harmful side effects to mask the pain and symptoms and not solve anything.
Does anyone have any recommendations or has gone through this before and what were you able to do to treat this?
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