Hi everyone, i had a laparoscopy in december to remove endo, i then had a miscarriage in february which was very early and it was a natural one, now ive been getting the same pain again as i did when i had endo and my GP have done blood tests and urine samples and everything came back clear so they said all it could be is endo again! I have been referred to a gyne again just waiting to hear for an appointment just wondered if this is normal to get it back after only 3 months?
Hi nina, they told me they lasered it off? The symptoms are really low abdominal pain that is always there it just varies in intensity, sometimes I literally have to curl up in a ball and cry because of the pain. Also I am so tired all of the time no matter wat I've done that day I'm physically drained. Rberry, how else do they control it without laparoscopy or contraceptive pill?
Hi troubled girl. You sound like you have the same symptoms as me. I have been battling lower abdominal pain for the past 5 years. Sometimes has me doubled over, it's been happening more frequently. Went to the doc several times, have seen my gyn multiple times was told I may be have reoccuring cysts. Still having the pain, went to my family doc, she ordered multiple tests, colonoscopy, endoscopy, ultrasound blood work. Everything came back normal except the ultra sound which reveal a cyst. Ok... that was in Dec 11. Well, the pain still hadn't gone away. Went in Feb to see my gyn again. They told me from the 'sounds of it' and I have endometriosis and a tilted uterus probably due to scar tissue from the endo and suggested started me on the pill... Ok I decided to give it a try if it meant no more pain. After being on the pill for 2 cycles, still having pain and now more migraines I found a specialist. This was 2 weeks ago they did a vaginal ultrasound - found a cyst on my other ovary and determined I do not have endo rather I have adenomyosis. She went further to say there is no cure, no treatment other than a hysterectomy or menapause. Well I am still quite a few years away from menopause and I am not so certain that a hysterectomy is the answer. So, I have been doing research with my husband help and they say there may be a link between the lack progesterone and adenomyosis. So I am not going to try to self heal and see what happens.
My symptoms have been: lower abdominal pain cramping type; sharp stabbing pain generally on my lower left abdominal area-that one usually stops me in my tracks and I am curled up like a baby on the floor until it subsides; bloating regardless of what or how much I eat; gas even if I don't eat and lately been feeling depressed. I am otherwise a very happy and healthy married mother of two. I exercise regulary, eat well, work full time day and wait tables 2 nights a week (because I enjoy it). But this has gotten progressively worse over the past few months and I find myself grumpy, tired and in pain and it causes me to not do the things that I enjoy doing. I have so much more I can write about this but will save for another time.
Hi valerie, the symptoms you described are pretty much exactly the same as mine and I gave very irregular periods too. I really hope something can be done as me and my partner have been trying for a baby for way over a year now.
While there is no "cure" for endo, many women have been treated and the symptoms never return. This treatment im speaking of is endo excision. Theres 2 surgical ways to remove endo: cauterize (the burn it off) or excision (the cut it off). Cauterization is less effective. It only removes the surface of the endo implant. But its believed that endo implants are like an iceberg, you take the top of it off but theres still the bottom left, which can be worse than the top layer. Thats why cauterizing serves as a temporary relief, becausd there usually some implant still left. Excision removes the entire implant. The other difference is that excision can remove endo from risky places like the bowel and ureters, with cauterization that is not possible because its too dangerous.
Only endo specialists do excision. Visif the website endo-resolved (I cant give the whole website here) theres a list of specialists there.
Endo is also difficult to treat because there are different forms of it and the typical gyn may not be able to identify it.
Endo implants feed off estrogen. So if you have any endo implants that were not removed, even microscopic implants, estrogen will constantly feed that implant causing pain.
Thats why seeing a specialist is paramount because that would provide the greatest opportunity for all the endo to be removed.
So the women that are "cured" have probably had all the endo removed, but most women dont see a specialist, so its not removed.
I also have what is believed to be adenomyosis, for that reason im getting a hysterectomy. Adenomyosis (and really endo too) cannot be confirmed without taking a sample of the suspected tissue, testing at a lab and getting that pathology report.
my periods are all wacky as well. I started out spotting using lasts about a week, then i will bleed as in having my period which lasts about a week, then tapers off. And it is not every 28 days, never really know when it is going to happen, mainly because they last so long, I am never sure at what point to count from.
I have been suffering for the last 13 years in this time I have had 16 Laps and 1 laparotomy. If there is one thing that I have learnt over these years that I can share with you it (provided that you have not had children yet but are hoping to have) would be DO NOT TAKE THE HORMONAL TABLETS , THE PILL, THE INJECTION OR DEPRO VERA, DANNOGEN, SINYRAL, IMPLANTS!!!! I took all those meds starting at the age of 17 and all it did was NOTHING!!!!! to help, just prolonged it by a few months until the pain and endo came back. Thanks to all those hormonal treatments, I am now type 2 diabetic that was because of all the weight that I gained on those meds and the damage it does to your thiaroid and endocrine system and trust me it is not from eating. If you can and I know it is not easy, control the pain with pain killers, which is also not easy to do but it is a damn side better than having hot flashes, irregular bleeding spells, mood swings, weight gain etc.... Try and plan your life around it as your cannot plan it around your life unfortunately.
The only thing that practically saved my life was to have the Mirena inserted (now don't get me wrong its not going to heal you but it will buy you time) I managed to get my weight under control lost 27kgs over 12 months as well as my diabetes. I then tried to fall pregnant which by the way for the ladies who know this is not an easy task. I lost 3 pregnancies all at different weeks which I can only explain as heart shattering. However I managed to keep one little boy full term who is now 2 years old.
I am now trying for baby number two and well all I can say it that it is going to be a long journey. The endo has grown back ( so to answer some questions having a baby does not heal endo some women never know about is again after the first baby and for some well it does not go away) I am going to surgery on Tuesday for 9 different procedures at once so that I can start trying for baby number two after this Doc has already said that they are going to sterilize me.
Stay strong and positive even when you want to give up!!!!
thanks for the feedback.. I just started using a natural progesterone cream last night. We will see. the pain I was in yesterday was so bad I wanted to go back to the doc and just say 'take it out' but i really don't want that. So, I took a vicadin when i got home from work put the cream on and went to bed. Today I am still crampy but not the sharp pain that i was dealing with yesterday. I had sex with my hubby the night before, i think that is what triggered the pain.
Hi me82, thankyou so much for your comment. I've actually been to the doctors today as i thought I'd had another miscarriage (i had one in february) as i got the same symptoms but the doc i saw said that she couldn't be sure if it was or not? As me and my partner have been trying to conceive for 1 year and 4 months and not got anywhere, she told me i either had to choose between falling pregnant or getting rid of the endo?! She said the only other way to remove it is it to take a pill that stops your ovaries from working? She didn't explain this to me in much detail as she is not a gynacologist or a specialist but im not sure i like the sound of this? She said there nothing i can take to help me fall pregnant cos that will make the endo worse!! I don't no what to do and im not coping very well with it and shes put me on anti-depresants but i dont no whether to take those either now as i have heard bad things about them?
Ohhh I'm sorry to hear that! What is iui? Sorry my doctors have been so rubish I'm actually in the process of signing up to a new one because they haven't given me any decent information and they keep brushing me away as if this is nothing and it's so frustrating as I'm in pain everyday and I'm on my feet too.
It takes only 1 month for it to grow back unfortunately for some people. 3 months is pretty standard I guess. For most people, even with successful laparascopic removal it will be back within a year :( What a horrible disease!! Rude..
I sent u a message giving u information. I can tell all of you that pregnancy is proven to help reduce endo. i was pregnant 3 times between my surgeries. I didnt have that much when they went in for the second surgery. Good luck to all of us ttc.
Ohh really i didnt realise if coild come back that quickly? I guess its pretty normal then. That wud be the best case scenario if i was ti get pregnant but its just not happening! My partner has to be tested.
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