Hi I was just wondering if anyone had any advice for my situation!
Ever since I started my periods I have had horrific pain with them. I generally feel ill for the majority of the month - either feeling extremely sick/ really tired or having cramps. My periods are irregular and my cycle can last between 31 - 47 days. The day I start my period is when all of my symptoms kick in and I get - Extremely painful periods (I feel like somebody is stabbing me repeatedly!!), diarrhoea, I am physically sick, my legs go numb then get a really weird pain in them (this continues back and forth), I get a headache, I feel really faint and have come close to passing out a few times, I get a really bad fever etc etc! This all happens at once and it goes on for hours until my symptoms start to become manageable at which point I am completely exhausted and have to go to bed.
My main "problem" is I do not get these periods every month - there can be a phase of a month or two where I get which I assume to be a "normal" period - it is still painful with the cramps but it is manageable with pain killers.
I have been bounced between my GP and the hospital for nearly two years now. The gyno at the hospital gave me this injection that temporarily put me through menopause for 3 months to see if I still had the same symptoms or not. Without my period I felt relatively fine - the odd occasion I felt sick or had mild cramps but it was a god send to what I usually go through. I went back to the hospital after the 3 month period and explained this to a different doctor to who I saw before and they said because I had experienced no symptoms that I was fine and it is just a case of me having bad periods and to come back in another 3 months to see what happened. I was a little upset at this as they didnt run any tests or anything and they were telling me I was fine - reading up on the injection they gave me it was actually something they use to treat endometriosis so I was a little upset that this was completely ruled out as it could be a possibility the injection actually treated my symptoms? Anyway since then I had the most horrific period I have ever had and then two "easier" ones. I recently went back to the hospital where a different doctor ( I am assuming a more sr doctor) saw me and after my mum expressed concerns about endo and ovarian cysts ( my auntie has had a lot of problems with ovarian cysts) the doctor said " I will do you a lap if you want" but there is a risk to your liver, kidneys, fertility etc. I am almost 21 so I found the idea of this so frightening!
As my periods are hit and miss as to whether they have all the side effects or not it actually makes me feel pretty crazy! Being told by the doctors that its just bad periods and to forget about it really makes me question myself! Like when my periods are "ok" I feel like I have imagined the bad periods or something and that I must be ok but then I get an absolutely awful one where I am literally crippled in pain which makes me think there must definitely be something wrong! I am so confused as to what to do as I do not want to have a lap and it waste everyone's time if they dont find anything wrong! But I also don't want to leave it and battle through the bad periods if there is something wrong and it is making my insides all messed up and I just leave it!
I wondered if anyone had any similar experiences to mine? Or if you would avoid having a lap? Any advice would be brilliant! Thankyou so much xx
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All surgery carries risks of one sort or another, so it sounds like this doc was rather reluctant to give you the op. It is however the only way to be sure of whether you do have endometriosis going on, but before that you ought to be checked for the other issues that can also cause these symptoms, and rule them out of the way without the need for surgery.
An ultrasound scan will check for cysts, fibroids, ovaries stuck in the wrong place, tilted uterus etc etc A lot can be determind from a scan,.... just endo cannot usually be spotted this way.
Because your symptoms are matching up with the menstrual cycle even with a lap op which may spot endo and remove it, that might not resolve the heavy periods issue, though it might help with pain.
Ideally if you do have the lap, then take that fantastic opportunity to have a mirena coil inserted while you are knocked out. It does take about 5 months to kick in, but when it does it will stop your periods and give you back quality of life and much more quantity of worry free time.
The lap op shouldn't go near the liver or the kidneys...provided you are under the care of an experienced endo surgeon or even an experienced regular gynae surgeon.
As for risking fertility..yes there is a risk of scar tissue called adhesions, but the risk of that is far greater from endo wounds bleeding every month than one surgery procedure to check on the situation.
I must say his words have not been exactly encouraging have they? Makes me wonde rif he has ever done this type of op before.
Might just be a very wise idea to check his credentials for doing surgey on endometriosis - he may just be a bog standard gynae fertility surgeon with not that much experience of endo...which is a bit of a worry.
My advice...push for a scan 1st, to rule out other things.
Then go for the lap op. A diagnostic op to just have a look around is not very risky at all and quick to recover from. Basically you will have 3 stab wounds which heal up in a couple of weeks, and about 2-3 days of trapped gas (which can really hurt the shoulders - gas rises) but apart from that it is a doddle of an op for most people.
If they do find endo and they do remove what they find, then that will lengthen the recovery time, depending on whether they use a laser on very shallow endo or cut out the deeper stuff to remove it...and ofcourse depends on where it is and how much of it there is.
Hope you manage to get to the root of the problem.
Just because someone else in the family has endo doesn't mean you do. It is a common condition in the general population anyway, but that is no indicator of severity or of the location and we are all unique when it comes to endo if you do have it. It might not be anywhere near your ovaries or tubes and pose no threat to fertility...but you won't know till you have someone look inside and map out the locations it shows up ..if there is any.
You can check out on the following sites consultants and what they are like. If you know the surgery code bupa have a website to tell you when they last done that procedure and also how many in the last 12 mths I don't think you have to be a private patient to use it. Try searching finder.bupa.uk, drfosterhealth tells you there clinical excellence 1 is poor 9 is good not exact science but can help. Bsge.org.uk is another one which is the gyne official site. I agree before evasive surgery you want to know he's going in for the right reasons. Good luck x
You need an ultrasound probably an internal one to see if you have any cysts. If you do have a cyst then depending on the size you will need a laposcopy to ascertain what type it is and while they are doing this key hole surgery they can give you a diagnosis re the endo.
In the meantime look to your diet and exercise routine to try and help your pain. This is difficult but worth doing.
Cut out all wheat products. Cut right back on sugar, caffeine, red meats and dairy. All of these things cause inflammation in the body.
Try and eat lots of healthy fruit and veg. Try and eat ginger, garlic and turmeric. These are all anti inflammatory.
Try and exercise even when you have pain. Walking, yoga and swimming have helped me.
I am trying supplements myself as well as the healthy eating as my pain has got worse since my op which was three years ago (the positive effects of having my cyst removed are obviously wearing off.)
I'm trying magnesium, evening primrose, b vitamins, omega, iron and a supplement to help my liver.
What's your immune system like? Allergies etc? There is supposed to be a link.
I'm trying to sort of the root cause with diet and exercise. I'm hoping it will prevent more surgery. But it will probably need to be a bit of both.
Good luck with your scan. It may not be endo. Even if not a good diet will help with general health so it won't be a waste. X
Hi - I was interested in reading your story - do you mind if I ask you how you are feeling now. I am trying to go down the natural way as well - or as long as I can.
Currently not so great hence the health kick. I totally changed my diet in the year after my lap. I lost 20kg and trained for the Inca trek which I knew I had to be super fit for.
The last year I was out working in the Middle East and the long hours, stress and poor diet took their toll. I'm happier now but need to lose some weight again.
My pain has also increased again but the last scan I had suggested that things might be getting stuck together which fills me with dread.
I've done a lot of reading in the last few months and feel that this problem needs to be tackled on all fronts.
The other thing I was considering was progesterone cream which I've read about as being something else to try. Might stick a post on here and see if anyone has had any luck with it.
Good diet can only help but it's so hard at the beginning.
Hi again Starstellar7 - many thanks for coming back to me and sorry to hear you are a little under the weather. It is interesting you have come to the conclusion that endo needs to be tackled on all fronts - I do now feel that all aspects are just as important as the other certain meds/gentle exercise, diet, it's all integrated isn't it. I've not heard of the progesterone cream and I'd be interested to see what responses you get back when you post the question.
Hi there - so sorry to hear of all your pain - for me being diagnosed was important and in my case, it was effectively taken out of my hands. I knew there was something wrong ever since I started my periods but it all came to a head as I suffered a huge breakout having been on some form of contraception for 30 years. I attended a 24hr clinic and within an hour I saw a gynae consultant. My internal scan was inconclusive but because I was bleeding when I attended, my consultant could see the chocolate slug that we have and to find out the extent of my condition he had to carry out a lap D&C which resulted in a stage 3 diagnosis.
The lap isn't fun to go through with but I reached the stage where I just wanted to know what was going on which took precedent. As Impatient says, the gas in the shoulders isn't much fun but I used those heat patches you can get from boots/Tesco and they really helped me.
Please read and carefully consider Impatient's advice, she is truly extremely knowledgeable and offers sound advice.
Starstellar7 also gives you good advice about the endo diet - I also follow the endo diet (not strictly) but I have identified foods that I cannot tolerate and have very little of them if at all - it may help you.
Unfortunately, I find that I am unable to exercise as it makes me feel worse.
I am also trying magnesium - try Solar brand its wheat free, sugar free etc DO NOT TAKE MAGNESIUM OXIDE
Any surgery carried a risk but l as advised by Help 123 take a look at the Bsge.org.uk website for surgeons who are experts in endo.
Above ALL, YOU need to do what is right for YOU - do not feel pressured into doing or having any treatment/medication that YOU feel is not right for you. Get all the info so you can make an informed decision that you feel comfortable with - don't have any doubts
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