Urgent advice on laparoscopy

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Hello! I'm new to this site and I would really appreciate some information about anyone who has had a laparoscopy for endometriosis.

My name is Abbey and I am 16 years old. I started my periods at 11, and since then, the pain and everything that has come with it has escalated to the point where I am having a lap to diagnose endometriosis (or not!) I have a varied range of symptoms, varying front the tell tale signs of endometriosis to information that hasn't been seen in young women my age a great lot. It would be really useful to know if these are symptoms that are experienced in people with endometriosis and not something else. Here's the rundown:

Intense period pain that leads to vomiting (pain that can't be controlled with the pill, combined with naproxen and co-codamol - I have also tried mefenamic acid but my gastoesophageal reflux disease didn't like this), intense pain when urinating on period - cystitis like symptoms accompanied by the feeling that there is something 'squishing' down onto the urethra, and more often than not I have to push really hard to start the flow, a weak pelvic floor (incontinence, which is really embarrassing for me at 16), pain when walking long distances - a pulling in the hips with some sharp pain, almost like something is stuck, pain in between the periods - some of the pain is very close to the skin, almost like a burning/itching pain which is hot and could be scratched and deep pain along the bikini like, the loss of dark blood and a lot of blood (although the bleeding has been reduced by the mini-pill - I have tried countless double pills but all made me vomit after the seven day break), pain when passing stools and sometimes I have difficulty, and this results in bad psychological effects (depression).

I have been told that this is contradictory in terms of endometriosis, but I would deeply value the responses of other people, surely this isn't just me? I feel like because of my age, the doctors aren't taking me seriously enough compared to someone who is of an older age, I experience this pain on and off throughout my cycle, and it feels similar to the pain that I experience on my period. One doctor even told me that it is 'unexplained pelvic pain', and I can't understand why he said this.

I have had three ultrasounds, all of which came back clear. Now it is the final push to see what is really going on, because I need answers. Endometrial specialists have said to me that because the pain is getting worse, I'm not going to 'grow out of it' as such.

Thank you for reading this, I would really value your comments because I feel like have to battle with the doctors and I feel like I am struggling alone, I just want to know that this is not just some crazy rare thing going on.

Abbey x

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  • Posted

    Hi Abbey,

    First, please understand you are not alone. I'm so very sorry that you are going through this at such a young age. Endometriosis issues are not understood in the older woman, let alone in the teenager who is going through all kinds of physical and emotional changes.

    Second, I completely understand your pain, depression, and anxiety. I believe you. I believe that you are having the worst pain some days and that nothing you take or do alleviates it. I believe you because I watch my daughter go through this every day.

    My daughter just turned 16. She began her periods at age 13, and ever since the very first one they have been awful. Heavy bleeding through an overnight pad every 15 minutes. Blood clots the size of my fist. Exceptional amounts of pain. Bleeding that lasts two weeks. Motrin, Advil, naproxen, Tylenol helped her a little, but not much. Even her norco pills don't help some days.

    I took her to her pediatrician and they put her on a birth control pill. It didn't help anything. So after 3 months they changed it to a different one. After 4 different pills, and no change, she took the depo provera birth control shot. Nothing helped. At this point she had learned to use tampons and would bleed through a tampon and pad every 30-40 minutes. She always had accidents, and overnight, every night, it looked as though we had slaughtered someone in her bed. We had also been seeing an obgyn, and it was this dr that gave her the depo shot. She was 14.

    In June 2015 she started her period and didn't stop. Still, to this day, she is bleeding. It's been almost two years.

    In November of 2015 we went to see a spacialist obgyn at UCSF. After putting my daughter on depo shots and the pill, she manages to slow my daughters bleeding to what I'd describe as an average light day of spotting. However, every week or so she'd have definitive break through bleeding where it looked as though we were back in the Slaughter house. At this point, we would do a birth control pill taper, 4 pill, then 3 pills, etc back to 1 pill and this brought her back to the light days. She never stops taking the birth control pills. The placebo week is missed, and she's continually on it.

    In June 2016, my daughter underwent surgery. Just a looky-see. Take a peek inside to figure things out. This looky-see lasted over 5 hours as the surgeon found stuff all over her abdomen. At the same time a Mirena IUD was placed in an attempt to control her bleeding. The stuff they cut out from her came back from pathology as stage 3 endometriosis. My daughter has the insides of a 60 year old woman. She is 15.

    The IUD had to be removed 4 months later due to the cramping it caused. He pain was so much worse with the IUD. She was still bleeding and still in pain.

    She told me in October that she wanted to die. That she's had enough of all the pain and bleeding. She was unable to go to school. She was unable to go out with friends. If she sucked it up and went out, she had to use the bathroom every 15 minutes to make sure she wasn't going to leak and have an accident. She was always on edge, could never relax, always sure she'd have an accident. And she did. Many, many times. She was embarrassed and humiliated. So she stayed home. Separated herself from her friends.

    I got her immediate help. She sees a psychiatrist and we have had 3 different counsellors and still trying to find the right fit for her.

    We spent time with a hematology specialist at UCSF too. Just in case she had a blood issue which caused her excessive bleeding. After weeks of lab work, she does infact have low fibrinogen, which is a blood clotting factor that hold blood clots in place. While not absent, this factor is deficient in my girl, but not enough to cause the bleeding she's experiencing. Her hematologist said her issues are mostly uterine.

    So, here we are. Still in pain, still bleeding. I'm at my wits end trying to figure things out. I read, read, and read some more - on anything related to endometriosis. I believe I understand this disease a little. Not a lot, and I've done my research.

    It has been mentioned to try a drug called Lupron. Our local obgyn (two of them actually) and our pediatrician all suggested this. We spoke to her specialist surgeon about Lupron, and she was dead set against it. As my daughter is so serverly depressed, she believes Lupron will push her over the edge at this point in time. Lupron will cause her to go into early menopause and has depression as one of the multitude side effects that can happen.

    At the pain dr I asked for a TENS unit. It has helped my daughter a little bit. I told them I didn't want to keep giving her norco pain pills. They are addictive and cause constipation.

    Side note here. In addition to all her issues, my daughter also deals with constipation. It physically hurts her to have a bowl movement. Sometimes it's painful for her to take a pee, but I have been giving her an enema each week, despite taking stool softness and Miralax.

    The pain dr did a nerve conduction study on her abdomen and suggested we do a nerve block injection. A Superior Hypogastric Plexus Block. It described it as putting out a forest fire. Her abdominal nerves were so sensitive and literally on fire due to the endometriosis and pain. They never had a chance to settle down. The first injection puts out the fire. But there are still hot spots and embers. The second, or third injection helps douse the remaining fire. So the series of injections build upon each other to help reduce pain.

    My girl had her first shot about 6 weeks ago. Within 2 days her pain had been dramatically reduced. She did have an allergic reaction - often normal and unfortunate, to the steroid that caused her face to flush and look like really bad sunburn for 5 days, but hey, she was feeling so much better. It didn't last long though.

    This past week has been one of the worse weeks I can remember. She hasn't been out of bed. Our second plexus shot is scheduled for Match 7th, and I hope it helps. Advil, norco, are not helping her pain, and with pain come hot flashes, sweats, vomiting, nausea, and depression.

    She's sleeping just now after being up all night. I'm not sure where we are heading. It's been a tough week for us. We are in with the pediatrician this afternoon. I want to rule out appendix pain, because she has lower abdominal pain both when you press in the lower right quadrant, and upon release too. I cannot tell if she has fever due to the constant Advil and Tylenol she takes. Pain is very bad with vomiting. Even the TENS unit provides no comfort.

    I'm hoping this second spine shot will help. Otherwise we will be looking at Lupron.

    I do hope you find some comfort knowing you are not alone in this battle. Find a doctor that believes you. Having someone verify your pain and discomfort makes a world of difference. I hope your surgery finds something that can be cured and helped. Good luck to you.

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    • Posted

      I am so, so sorry to hear about your daughter. It has really touched me and has made me realise how lucky I really am, and I'll never fully be able to understand what your daughter is going through because it is so horrendous. Thank you so much. I'm not doctor, although I want to be, but endometriosis can disturb the appendix, so it is completely worth having it checked. I get hot sweats too, it's everything that comes with the pain that makes it ten times worse, and I understand how that feels. I have the same searing, burning pain on the top of my abdomen on my period and I can't touch it bevause it is too painful, so I will look into what is causing this. I dearly hope that your daughter gets the relief that she deserves. I've been researching and researching 'symptoms of endometriois' and 'is *insert symptom here* a symptom of endometriosis', but this is opening my eyes as to just how poorly understood the condition is, and how it varies from person to person. My bladder pain is one of the worst parts of my condition, as I feel like acid is pouring out of me. I declined to have the IUD put in as I am finding that the degestorel pills I am on now (I think it is the equivalent to depo) are the best so far, as estrogen causes me to have frequent migraines and vomiting. I hope that in the future we can find cures for this terrible disease.

      Abbey x

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    • Posted

      Hi, can I just say that this post has literally brought me to tears. It's so sad to see our children suffering like this and not being able o physically help them. It broke my heart to read that she wanted to die. I can honestly say I've never had that problem with my period lasting that long, but long enough to make me feel upset and distressed I can only imagine this is a constant nightmare for her. I can sympathise completely with the clot side of things and the sizes you said your daughter has had. They can be the worst pain in the world. I myself have been reluctant to visit the dr about my problem because also worry they will palm me off with meds and be told to see how things go. It's a vicious circle that no one should have suffer with. I do hope your daughter gets the right help she needs and this problem is fixed sooner rather than later. When I had my 1st laporoscopy I was admitted into hospital with sever abdominal pain, along with being diagnosed with stage 2 endometriosis I had a grumbling appendix which was removed during the same procedure. Your daughter is so young and it's so sad she's having to deal with this day in day out and for so long too. I do truly hope herself and you can get the right help she needs to sort this out.

      Wishing you all the best

      Sonia xx

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    • Posted

      Hi Sonia,

      Thank you for your response. It's been a tough life so far for my girl. These past two weeks have been two of the most difficult. Our pain dr believes it's due to her coming off the depo provera shot. She was due to have another the beginning of January, but because we are contemplating Lupron, my girl has to wait until the depo wore off. We were so hoping these plexus block injections were going to significantly help so we could take Lupron off the table. Her next back block is this Tuesday. Tomorrow will be a bad day as she has to be off all pain pills and anti inflammatory drugs 24 hours prior to the shot.

      I read below about your issues, and I'm so sorry to hear about your pain. This disease really sucks and it strikes so many women, each with their own symptoms.

      I did take her to get a check up too - the X-ray they took showed she was FOS - full of poop! I know the medication causes constpation and she takes two pills of stool softener, plus a dose of miralax every day. She dreads pooping because it can be so painful.

      Just to reassure your experience of having cramps like labor pains, we were at UCSF a few months ago waiting to see the specialist. She was working on the ob ward that day and had asked us to come in so she could check my girl. The dr had the nurses put on the electrodes and tummy belt they strap to pregnant ladies to see how strong their contractions are, amazingly my dsughters cramps registered on their system. The cramps she was suffering were the SAME as a woman in active labor!!!!!

      Thanks once more for your empathy and well wishes, I wish you the best too and hope you get pregnant soon. ?

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    • Posted

      Hi pinkie

      Honestly I can deeply sympathise with your daughter. And it must be so hard for you too. I've had 1 child who is 10 in June. I was told I was lucky to have carried him full term let alone conceive him. My endometriosis was so bad it was literally eating away at my placenta. That aside, my labour was a piece of cake, 31 hours long but only about 6 hours of strong pains. My midwife actually said I was one of the calmest patients they had ever had. I replied with I have had periods worse than labour pains. Again I can't stress enough how painful it is when I have bowel movements. When I try and tell my partner, when it literally has me in tears from the pain, he just doesn't understand. It's nice to finally hear of someone else having the exact same problem. The only thing different is I haven't had that constant bleed for as long as your daughter has. I really do hope there is a treatment that can help her or at least ease things. Thank you also for your kind words. I can understand completely.

      Xx

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    • Posted

      Steer clear of provera the pill and the lupron, I ended up on HRT - estrogen only in my 20's because of the provera injection and my dr says the lupron would be even worse. The only thing that worked for me was Mirena IUD

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  • Posted

    Hi Abbey Grace

    This all kinda sucks. Endo sucks and though I would wish it on my worst enemy, I wouldn't wish it on anyone else.

    Especially at your age but also for many senior citizens, it's hard to remember that the human body is not completely understood. Worse yet, our female bodies are less understood. Until the advent of BCP mid-20th century, very few women made it into drug studies so all older meds were only tested on men. Where I live there are many drug study companies in constant operation, and they still skew towards young men for 75% of drug studies.

    The same applies to everything about women's bodies. Our bodies are much more complex than men's and much less understood. Beyond that, EVERYONE, docs included, forgets that everything in medical education is based upon averages. Instead, EVERYONE thinks that when a medical text says A, B, & C and doesn't mention D, then D can't possibly exist in the human body. That's simply untrue.

    We endo sufferers come hard up against all this. Even less is known about our disease because it was only identified less than a century ago. Further, it doesn't afflict men so they're less interested in researching it, studying it and, all too often, treating it. Take heart, for so much will be learned & developed in your lifetime.

    I know this because I'm in my 60s and tons more is known about endometriosis now than in the '70s & '80s, and there are many more treatment avenues now than then.

    I am not saying that all male docs are uninterested &/or incapable of treating us. But we are frustrating for ALL doctors. Did my symptoms match yours? No. I understand that no extrapolations can be made from my statement. I also understand that if a doc sees 200 Endometriosis patients and only 1 patient has your symptoms, no one can say that you don't have endo unless that's what the laparoscopy shows. Most docs, including some very good ones I know, would say otherwise. They'd say you can't have it because you don't match the other 200.

    Your docs haven't said that, though. It takes a lot to get docs to do a laparoscopy on someone your age. Clearly they suspect you've got a serious problem. It may not feel warm & cuddly but you're not being ignored.

    When they say that you have unexplained abdominal pain, here's what that means: "I examined & observed this young woman & either she's the best actress on earth or she's got serious pain. But I can't point to the source of the pain. Needs further tests, etc." It means that right then he can't explain it medically but it's there.

    Every doctor who reads that phrase on your record understands it to mean what I wrote. Please believe me when I tell you that they use other phrases if they don't believe you.

    So do your laparoscopy, get the results & go from there. The endo specialists are right, your problems aren't going away n their own. If it is endo, please understand that it never takes a rest unless we force it to do so. And keep in mind that many docs get scared by things they don't understand/can't explain, and many are constitutionally incapable of treating chronic pain. It's frustrating for both us & them. Doesn't mean that they should get to keep practicing if they can't deal with us :-\

    Good luck, Abbey.

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    • Posted

      Thank you so much. I now feel a lot better about what is about to come, I understand that with every woman there are different symptoms, it is a very individual disease. I'm just worried about if it isn't that, what is it? I've had the gut feeling that it is endometriois for a long time, but only a laparoscopy will tell. I feel very privileged to be having this operation, especially at my age, it must be so frustrating for doctors x

      Thank you x

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  • Posted

    HI abbey, just to start with please don't ever feel embarrassed with how things are or the details you give. Most drs would appreciate the details you have given to save them asking questions and having to work out what's wrong. Sorry to hear you have been struggling with such an annoying problem which can I just add, somewhere in our lives we have all had the same thing hence why we are here just now! I've only just joined the endometriosis forum for the same reason of currently having problems.

    I am almost 29, started my periods at the same age as you did yours and at the age of 14 was under gaenacology for the exact same reason. Heavy periods extremely painful, lasting anything up to 20 days. I would firstly like to say you most definitely aren't alone. I have suffered the exact same problems and about 8 years ago was diagnosed via laporoscopy procedure with stage 2 endometriosis. So sort of in the middle of severity. Since then, I must admit my symptoms have never really improved much. I joined here because I am currently on day 4 of my cycle and my period has been extremely heavy and the pain has been unbearable, along with having only 11 days ago had surgery to remove my gallbladder! My symptoms from endometriosis consist of heavy periods, big/ thick blood clots, pain in between periods, which I can only describe as labour pains (labour pains are just like period cramps only worse) constant period pains when on period, chocolate cysts, sharp pains shooting through back passage area which last about 10 seconds but makes it so hard to sit and is very breath taking when they happen. The last 8 months or so for me, I e found the down below area to be very very tender and sore and using tampons is so uncomfortable, hence why I came on her to express this concern. I have also recently stated having bleeding from the back passage, (symptom of endometriosis) and also opening my bowels is the worst pain and someone's difficult to the point it scares me when I need to go! It sound to me very much like how I have been for so many years. I've been treated only once for my endometriosis. You aren't on your own and it most certainly isn't just you. This is a common thing and you are so right to keep pushing the drs about this. Your age shouldn't come in to it, it makes me sick when I hear on the news that young girls are dying from things like cervical cancer because they were refused a smear test. Don't be fobbed off and don't let this ruin your life. It is so easy to treat endometriosis but there is always a chance of it coming back. You could have the smallest amount and suffer bad or the biggest amount and not suffer at all. If you are very worried please seek a second opinion. Can I ask how long your periods last? Are they regular? Do you have clots during your periods?

    You're on the right place if you are after support and advice. I would just also like to add that the medication given to me never really helped much mefanamic acid and tranexamic acid I was given along with naproxen. I have always been unable to take the pill due to suffering with severe migraines. The mini pill was the only one I could sometimes manage but never really helped with my symptoms. I'm also here as me and my partner have been trying for a baby for almost 3 years and sadly haven't been successful which makes me worry it's back and causing some damage. Some people need medical treatment to help with this and others can live a normal pain Free symptom free life whilst others really get all of it. I hope things get sorted for you and you will soon be pain free from this horrible situation. Hope that helps and sorry if I've gone on a bit but I can understand completely.

    All the best

    Sonia xx

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  • Posted

    Hi Abbey!

    I hope you're feeling a little better today. Thank you for your reply and sympathy for my girl. It's been a tough time for her, especially these past two weeks.

    I wanted to tell you about a Facebook site that you should check out. It was started by an obgyn nurse, and she has a list of specialist gynos that do surgical excision of endometriosis.

    The site is:

    Nancy's Nook Endometriosis Discussion and Education

    You will have to request to join, but it's a wealth of information for you to look at prior to trying for that lap.

    Good luck and best wishes always to you.

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  • Posted

    Hi sweetie,

    I sympathize with you, I also had endometriosis at 16 i'm 35 now and you sound like you have more than just endometriosis. I've found though when you have endometriosis it leaves you wide open for a whole mess of other health issues. I had my first surgery at 16, then 18 then my appendix out at 19, then gallbladder, then seizures and the list goes on. When you say 3 ultrasounds came back clear were they internal ultrasound or just the one on your belly? I've found with either though it all depends on the person doing it. I've had them come back clear too on a few occasions until you see someone who knows what they are doing and they find everything that's going on in there. You usually don't grow out of these things but if you find what the real problem is it makes it much easier to treat. Don't be scared of the surgery it is a simple procedure and your home that day minimal pain especially considering what people like us are used to

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