Marijuana for Endometriosis

I am not your stereotypical pothead. With great success I have been able to develop responsible and trustworthy roles in life as an employee, manager, daughter, sister, niece, aunt, best-friend, girlfriend, confidant, and doting pet owner. Even my credit card company sends me birthday cards. But that doesn’t mean my life is without great pain.

My battle with endometriosis began long before I even knew there was a name for what I had. For too long of a time I just shrugged at the shitty hand I was dealt in life and medicated myself with pain relievers, at my doctor’s advisory – some days overmedicating myself to the point of vomiting, albeit not at my doctor’s advisory. Very few people could truly understand, and because of that I didn’t get many free-passes, let alone much sympathy. I still had to get through school; I still had to go to work; I still had to go about life without any excuses, whining complaints or very much help. Inadvertently, the effect this had on me was profound. It toughened the hell out of me.

By the time I turned 32, the disease was wreaking havoc within my body. Pain was no longer associated with just my period – it was now on a daily basis. The once-a-month bad dream that began in my teenage years had now metamorphosed into a daily living nightmare. Some days I had very little energy and felt near narcoleptic. No exaggeration. Most days I would experience on-and-off cramps ripping through my abdomen, as if I swallowed a cup of sewing needles and they were working their way through my intestine. The excruciating stabbing pains that would sometimes last for hours, I equated to the searing sensation of an epee sword thrusting through my abdomen. A good whack from a baseball bat could be likened to having caused the severe tension across my lower back; and the aches that seized up the muscles through the tops of my thighs felt much like the burn from running a 5k, only I wasn’t running anywhere. This was my daily grind.

Yet I still had to get myself to and from work, navigate through the senior citizens at the grocery store, walk and feed the dog, make dinner, do the laundry, attend weddings and parties, meet deadlines, and basically function. I was popping pain relievers like they were tic-tacs.

I couldn’t ignore, or let alone treat what I was dealing with by swallowing prescription strength ibuprofen, naproxen sodium and meclofenamate throughout the day any longer. Nor could I ignore the effect this would have on my kidneys and liver. I had to do something; so again, after seeking my doctor’s counsel for the thousandth time I finally went under the knife for laparoscopic surgery to assess exactly what was going on inside my body.

As advanced as medicine is today, it isn’t perfect. CT-Scans, sonograms, ultrasounds, etc, cannot identify endometrial tissue growing outside of the uterus and latching onto organs and intestines, like little malignant vines cutting off valuable nutrient and blood supply. The only way to positively diagnose endometriosis is through a laparoscopic procedure, in which a small incision is made under the belly button so a small investigative scope can be sent in, like Jacque Cousteau in search of the elusive giant squid.

In my case, two more incisions were made right under the bikini-line so the flourishing weed-like endometrial growths, along with a fibroid the size of a chicken’s egg could be removed.
All was well, or so I thought. Several months passed and with the occasional check-up by my gynecologist, I seemed to be doing better. More importantly, I was finally feeling better. Albeit, the caveat here is that medicine is not perfect. Doctors are not perfect. Moreover, life, as we all know by our 30’s, is far from perfect.

It took a little less than a year for the endometrial tissue to regenerate and begin its vengeful torture on my body once again. Only this time it would be near crippling; emotionally, mentally and spiritually.

When the heavy periods started again, along with the cramps, I told myself, “Okay, I’ve been here before. I can deal with this. It’s not as bad as it used to be.” But then it got worse. When the daily pains started in again, I told myself, “Not again. I can’t go through this again.” Channeling Samuel L. Jackson, I went back to the gynecologist, who is a board certified, decorated, and revered surgeon in this field, and said, “That mother-fucking shit is back. Now what?”

That’s when I was told that most women, about 80%, who undergo a laparoscopic procedure for the treatment of endometriosis successfully go on with their lives without any resurgence of the tissue or continued problems. The other 20% aren’t so lucky, and experience repeat growths. What’s more, chronic sufferers run the risk of developing endometrial cancer. Ironically, the culprit in all of this is the one thing that makes a woman, a woman – estrogen. Or rather, too much of it.

My choices were gut churning. I could go under the knife again, but there were no guarantees; plus, it didn’t mean I would avoid further future procedures. It could become as cyclic as a dog chasing its tale – how many surgeries would be enough?

Another option was menopause, via one of two ways – surgical or induced chemically. If I chose surgical, that meant a hysterectomy and it certainly wasn’t the answer. After a hysterectomy a woman is put on a hormone treatment to synthetically supply the body of what has been permanently been cut-off – estrogen. That would put me back at square one, not to mention that pursuing this option would never allow me the experience of child-bearing.

A chemically induced state of menopause seemed like a more favorable choice, until I read about the side effects. Depression and anxiety are two, (among a long list, including lowered blood pressure and heart palpitations), so to combat this, additional prescriptions are given for anti-depressants and anti-anxiety pills. I started to weigh the pain I was experiencing against the new sense of fresh hell I was considering entering. Everything on the list of side effects was honestly depressing, but mostly treatable, including hirsutism. Look it up and you will read what I read: Hirsutism is a condition where women have excess facial and body hair that is dark and coarse. The abnormal hair growth usually happens on the body where men typically grow hair – on the chest, face and back.

Basically, I would turn into a werewolf. A depressed and anxious werewolf, who most likely would be single, childless, broke from electrolysis and living in seclusion where Fresh Direct, Amazon and liquor stores deliver. Good luck to my girlfriends who would try to get me “all dolled up” for a night on the town. I think I saw an X-files episode about that, but I digress.

The other course of action was to do nothing. To wait and see – maybe my body would regulate itself. Maybe my body would heal itself. Maybe I would hit menopause and everything would be okay in about 20 or so years. Maybe I would also win lotto and become a millionaire. Twenty or so years is a long time to wait.

Saying that I felt like someone just gave me a massive wedgie is an understatement. I felt powerless and just dumb in the sense that there was no real or “good” answer. It felt like I couldn’t get rid of this shitty hand, and I surely wasn’t prepared for the next card endometriosis would play.

For most, sex is a joyous event. Even if you don’t achieve climax, maybe you have burned a few calories and can chalk it up to a good cardio session. Ideally, unless you are into twisted encounters, sex should not be a painful experience. It should not rob you of joy, or pleasure, or even the blissfully fragile state and vulnerable intimacy of sharing yourself, flesh, desires and all with a loved one. Nor should it make you weep, or plead to an unrelenting tormentor to stop the pain. That’s more of something you would associate with a horror movie, rather than a porn flick (a typical one anyhow).

I don’t exactly remember the first instance I experienced pain sexually, but the pain in itself is vivid enough to recall with great detail. Sometimes the pain will start during sex, sometimes it strikes after, but either way, the pain is piercingly cruel and is capable of dropping me to my knees. There is great humility in confessing the sobbing mess I’ve become while curled up in a ball wondering, “why am I being punished?” The pain is unimaginable and immeasurable, and has been so intense at times I’ve vomited.

The only way to paint a picture of what is transpiring during these awful moments is to take the examples of all the pain I described earlier, add rocket-fuel and then set it on fire, launching it out of the stratosphere.

If you have ever experienced unexpected and excruciating pain, you know the panicked search that sets in to find comfort and relief. But you also know that the search is futile. You have to ride out the pain until it subsides. For me, my search is for cold surfaces to lay my naked body on, like tiled floors and cast iron bath tubs. The pain is crippling. A bus careening off the road and smashing through my front window would not be able to move me – I would have welcomed death many of those instances, and I’m not suicidal. Ice on my bare abdomen has become my only reprieve, but it’s not absolute, nor a fast acting remedy. The insufferable minutes sometimes seem like days, and if the pain lasts an hour or more, I am beyond inconsolable.

At first it didn’t happen every time I had sex; it just seemed to happen every so often, but then the frequency picked up until it was happening 90% of the time. It got to the point that I didn’t want to have sex anymore. I honestly became scared of sex because I just couldn’t take the pain anymore. It was making a whimpering coward out of me and I was slowly turning into a shell of myself. I didn’t feel like a woman anymore. I didn’t feel sexy, or sexual, let alone sensual or seductive. You know, all the good “s” words. I didn’t want to be touched or wanted, in fear of where that may lead and the agony that would ensue. I wanted to hide under a heavy woolen burka and just not be a woman anymore. There were times I couldn’t hold back the self-pitying tears, and there were times I wanted to punch gaping holes in the walls out of sheer frustration and anger. Essentially, this was ruining my relationship. It was ruining my confidence. It was ruining me.

Not only were the days soiled by touches of pain and cramps, I couldn’t, or rather wouldn’t share myself at night with my beloved partner, who also felt helpless through this entire ordeal. We didn’t travel anywhere without an arsenal of pain relievers and ice packs. We tried so many different positions that promised to put less pressure and stress on my pelvis to no avail. Our sex life became something we both longed to reclaim. I needed and wanted hope, and the idea of losing myself and my partner sparked a search for a remedy that directed me to the most unlikely source.

Before I hail pot as a cure-all here, I must say that I have done my due diligence. I have seen various doctors (some who I question if they went to medical school or found their degree in a cereal box), done hundreds of hours of research and have endlessly searched for information, hope and help. Currently I am taking various supplements to help stabilize my estrogen production, increase estrogen metabolism, boost my immune system as well as treat and reduce tissue inflammation.

Another measure I took was drastically changing my diet. There are yummy but nefarious foods out there that can do two things: 1. Produce an acidic environment within the body, which encourages internal inflammation and pain, and 2. Increase prostaglandins, which in turn stimulate estrogen production. This meant limiting and/or avoiding sugar (gasp!), wheat, soy products, caffeine (double gasp!), alcohol (say it aint so!), dairy products (you’re killing me now), red meat, saturated fats and oils, refined carbs, and the super badies: additives and preservatives. Yes, there is life after a severe diet modification such as this one. It just takes some getting used to.

All of these things thankfully helped, but didn’t solve my problem. Plus, I do like my cup of coffee with milk and sugar in the morning. I also happen to love chocolate and to live without it forever is honestly impossible. Willpower be dammed – if enjoyment can be found in the nib of something as divine as chocolate, I will partake. Nonetheless, supplements and diet restrictions didn’t eradicate the pain. It still spikes up and knocks me on my ass from time to time.

I sought out more medical counsel and was recommended a hormonal implant option, one that was not recommended to me before. It only releases progesterone, and in theory, would even out the uneven balance of hormones within my body. I was desperate at this point and opted to have the implant inserted. That fateful day would go down in the history of my life as one of my worst days on this planet.

Only given a topical anesthetic, (I must stress t-o-p-i-c-a-l), along with a pill that was supposed to relax my cervix, the (expletive) doctor inserted this inch and a half long device shaped like a T, (look at the letter and just think about it), into my vagina and up into my cervix. It felt like a back alley abortion. I was written a script for 500mg of Tylenol and sent home to spend the next five hours begging my partner to either drug me or kill me.
Nearly a year later, I still experience pain on a regular basis, although much more mildly.

So now I am here, back to my original point and message. At no point on my journey did any doctor or practitioner ever recommend marijuana. Its medical uses are vast, from the treatment of glaucoma, to helping cancer, and AIDS patients. It helps relax the muscles, reduce inflammation and pain, reduce nausea and even stimulate the appetite.

I sought out marijuana as a hopeful option for these reasons… and it works. If I’m cramping, it helps soothe the muscles and reduce the inflamed tissue, and I’m able to get through what would normally be an unbearable ordeal. During my period, it is my best friend helping me through a couple of hellish days. As for sex, marijuana relaxes everything from my muscles to my nerves to the point that I can have sex like a normal woman, without any consequence. To even type that phrase, “normal woman,” brings tears to my eyes – it reminds me that for so long I haven’t been one.

When everything is okay in life, you take that state of being for granted. It’s not until something is taken away, do you then realize its true value. To be able to wake up, enjoy the day, enjoy your partner, and just enjoy being alive is a virtue – one that we all should be afforded. So if on my quest in life I find myself unable to procure marijuana from a male-minded western school of medicine, I will take the risk of seeking it out from a trustworthy source. Being pain free and feeling like a woman is worth that risk. Does this make me a drug addict? Does this make me a pothead? Does this make me a criminal?

After reading my story, do you really think I give a shit?

It’s a shame though that a medical connection has not been made between the benefits of marijuana and treating ALL of the plights in life women must face. If I were to list all of the drugs, from pain relievers to treatments that I have been prescribed and recommended, and then list all of their side effects, you would see a scary list of pharmaceuticals capable of destroying my body one cellular function at a time. Nothing is without consequence, not even marijuana, but its benefits far outweigh its side effects in my book. Until my doctor can write me prescription for marijuana, instead of Tylenol (laughable), only my dealer and I know how valuable that green jewel really is.

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As an update I would like to add that I have recently read another blog written by another endo sufferer. She posted that marijuana use did not help her, but rather exacerbated her pain. She also cited that she was told that marijuana use elevates estrogen levels. With this in mind, please read my post as an opinion piece, or rather a confession of an extremely personal experience; not as a recommended method everyone should follow. Marijuana has fortunately been a help to me, along with a strict diet change and use of supplements – body chemistry is unique to the individual so what may work for one, may not, nor will not work for all.
Best wishes and good luck to other sufferers out there – my heart goes out to you all!

About Ba Bennu

I've been a puppet, a pauper, a pirate, a poet, a pawn and a king. I've been up and down and over and out, but I know one thing; each time I find myself flat on my face, I pick myself up and get back in the race. That's life, I can't deny it. I thought of quitting, but my heart just won't buy it - beause if I didn't think it was worth a try, I'd have to roll myself up in a big ball and die.

Posted on February 5, 2013, in Brazine, Health: Mind, Body, Spirit and tagged , , , , , . Bookmark the permalink. 35 Comments.

  1. I just added this site to my bookmarks. I really like reading your posts. Thank you!

  2. Great post. I too suffer on a daily basis and now researching marijuana to help with endo/adhesion pain. What strain do you smoke? I hear different strains are good for different ailments. Thanks!

    • Thanks! …and you are certainly correct. There are sativas, indicas and hybrids that work well for pain management – Leafly.com was a good source of info for me (click: “start exploring”, then select “pain” from the list on the left under Medical Use and you will see a nice long list).
      I do like the Hybrid, Silver Haze (but I’m far from a sommelier on the matter). Its very mild and soothing; not the type to knock you on your butt stoned drooling stupid. Vaporizers are also a great investment (ie: vapor genies) – it does take some getting used to, but once you do, its a much “cleaner” and purer smoke. Basically, no charred lung feeling and your house wont smell like a Grateful Dead concert.
      I would love to hear whatever you discover, so if you find a good strain please feel free to share the info. Best of luck and health to you!

  3. Thank you so much for this! I almost feel like you have written about me. marijuana works instantly on almost all of my symptoms, and if the pain is too strong, at least it helps me sleep through it. I’m still struggling with the mental stigma of being a heavy marijuana user, but I’m slowly telling the people that I trust, and so far everyone has been understanding. I got up the nerve to ask my Dr about getting a medical marijuana permit, and she shut me down, though, saying that endometriosis is not on the list of diseases for which it is approved in Canada. So I’ll just look for another doctor…

    • My heart goes out to you – not only do we suffer from the pain of this disease, but we suffer through getting proper treatment, acceptance from friends and family, and just figuring out how to feel and be “normal.” It’s sad how endometriosis is not always taken seriously.
      One Dr, who seemed incredulous by my visit, actually said, “I don’t know why you want another opinion – what do you want me to do for you? You should have that hysterectomy.” He was a board certified prick, plainly put.
      I’m in the same boat, so yes, definitely be choosey in who you tell. The Mary Jane stigma is a bit of a mental wrestling match isn’t it? Always remember though that you’re helping yourself reduce or eliminate pain to bring your body back to a homeostasis; what we live with everyday isn’t “normal.” No one else has to live with your pain but you – so be good to you and don’t let anything, or anyone bring you down when it comes to this.
      Best of health and happiness to you!

  4. Thank you so much for sharing this!

  5. This post was like reading my own personal journal through the hell of endometriosis.
    I agree, supplements and diet changes help but not completely.
    Marijuana is a blessing and the best relief I have found for my symptoms.
    I am sick to death of being made to feel like a criminal druggie loser for using something that works without all the side effects of the drugs made in factories by companies that provide funds to political parties that create the laws that make natures plants illegal.

  6. Another thing to try is a supplement derived from silk worms which breaks down dead proteins in the body and can be useful for adhesions etc

  7. I was a heavy pothead growing up, through college, and a little after. So I had no clue what I was in for when I quit to get a job that required random testing. Shortly after I quit I started getting that horrible gut ripping sword and chain stabbing and yanking. Then one night I litteraly passed out from the pain and my husband took me to the ER. After tests and scans sure enough it was a ruptured cyst. Dr. Recommended laparoscopic surgery to remove the mine field. So they went in and vacuumed me out raising half an ovarery with the mess. Within a 3 months the pain was back and now the pain during sex and not wanting to be touched. I so wish I could smoke again. Maybe Florida will pass it this year but that doesn’t mean I can get it. I do take bioidentical progesterone now which helps a lot but not normal yet.

    • Sometimes it seems like an unfair never-ending journey in finding a peaceful state of pain-free living so my heart goes out to you – I hope you find a better way of feeling soon! Diet modification and supplements like bromelain, pycnogenol (pine bark), and DIM have certainly improved my daily state – they may not be fast acting remedies or the cure, but every little bit helps when it comes to this. About a year ago I would have ranked my level of pain a 5 (which was an improvement from the year prior); today I would say I’m ranging around 8 – and that’s without smoking.

  8. Hi, My name is Jamie, my wife suffers with endometriosis badly!! It is a massive frustration for me as I can do little to help and the consultants just comes out with shit all the whole time they seem reluctant to helpit seems to me that if the consultants dealing with cases where themselves sufferers they may have a bit more of empathy and interest in moving heaven and earth for the sufferer, plus I notice that the consultants always tend to be men what frickin use is that they have not even experienced a period before experience has no substitute!!!!! So
    reading your blog has kinda confirmed that Weed had might be something to
    experiment with as she has little to lose
    in doing it which only leaves my
    beautiful wife options, plus she can
    only take Ibuprofen and paracetamol
    which is like pissing in the wind!!! Plus
    she is allergic to morphine-codien which motabulises into morphine! So there are diffetent blends of weed and different routes of administration so a little more homework then I reckon we will give it a shot:-) thanks for the opinion:-)

  9. I’d love to chat with you. I’m the founder of Fuck Endo & we 100% support the use of cannabis for endometriosis.

  10. exactly what I have gone through, except at the age of 23 it feels more like I have lived to be an old woman forever more in pain and no one but other woman with these symptoms to understand when im having a bad day, even best friends have asked me why im being such a hypocondriac and not to mention all the dr.’s who have all said the same. I think considering we have given up so much in life that most people take for granted it becomes hard to act like everything is ok especially at my age and if cannabis is the only thing that relatively relieves these issues to where we can actual enjoy being alive an being human why shouldn’t we be allowed to try it. If being pain free makes me a pot head than I choose to be one for the rest of my life and shouldn’t feel the need to explain when so many people disbalieve. and to thinj I went through hrt as a last resort as u were contemplating and was the worst mistake of my life

    I feel your pain and give my ultimate respect towards you and feel empowered by your posting.

    • Only from recognition does the darkness and isolation seem to fade, but what we individually endure is our cross to bear. Sometimes the pain we go through is compounded by ignorance, impatience and even intolerance by the folks around us – the folks we have turned to for help and support, whether family, friend or medical practitioner.
      I empathize strongly with your sentiments and sincerely appreciate what you wrote. You as well have my respect.

  11. Martha Whitfield

    I stumbled on your post because I have been an endometriosis sufferer for over 17 years and now seeking marijuana as my last resort. Any suggestions on how often should smoke marijuana / gram per daily intake and which strand(s) worked best for you. Thank you for your very courageous and encouraging words!!

    • Hey there Martha, glad you stopped by. Estimating one’s intake involves a bit more science and math in factoring metabolism and body weight to achieve the right dose for relief; however, I will be happy to share what I found worked/works for me. 1) A vaporizer – the smoke is cleaner, less harsh and avoids the carcinogens from a burning wrapper (plus it reduces the wafting aroma quite a bit). 2) Frequency – As needed in small hits, appx 2-3, scattered throughout the course of a bad spell, or before intimacy are more effective (for me) than one large smoke session. My motive is to be productive and functional rather than incapacitated. 3) Diet – I know, this is an annoying aspect and I don’t want to preach, but restricting or avoiding a lot of the foods that trigger the flare ups has helped me immensely. Another take away here is the reduction of my reliance – I don’t smoke nearly as much now as I did when I first began this journey. 4) Supplements – Bromelain is a good anti-inflammatory; DIM and Pycnogenol (aka pine bark) are good for metabolizing and stabilizing estrogen. They are not extraordinarily expensive supplements and at least deserve some looking into.
      As for strains, I’ve tried Silver Haze (and technically have to be careful here with recommendations). Leafly.com is a good source of info – click “start exploring”, then select “pain” from the list on the left. There are sativas, indicas and hybrids that work well for pain management.
      Hope this helps, or at least points you in a brighter direction.

    • Another noteworthy note is that one lady on a similar path as ours chooses to make and bake goodies rather than smoke. She doses herself with bits of treats throughout a bad day to help remedy her pains (which is a lot easier to do when out and about). The book: Stir Crazy – Cooking with Cannabis has some great recipes and dosing recommendations.

      • Martha Whitfield

        Thank you so much for your detailed and very informative response. I will try anything natural now because all the prescriptive and OTC are just non – effective and physically doing more damages to my insides. ..ie ongoing gastric pains, kidney failure and ovarian cysts in both ovaries. I have tried for so long to deal with it and had two laproscopic surgeries but I am feeling its wrath again for the past few months because my five year use of IUD is due to be taken out very soon. How do you work with this kind of lifelong medical internal pain? I have such a high tolerance for most pains except when I feel like I am being punched and beaten to the ground from these burning deep pains. I will try your recommendations because I can have a good starting point to gauge (no spell check from my cell so excuse my spelling errors). I have so much to accept in dealing with the reality of my medical challenges. I want to see immediate responses but I know it will take time. Can you at least share how long did it take for you to see major progress??

      • I’m so sorry for this late response and hope it finds you well (a lot of my free time and writing was placed on the back-burner after my beloved pooch was diagnosed with cancer).
        The short answer for a distinction of MAJOR progress is: at least a month… but don’t despair – every day and week leading up to that one month mark was a better day than the day before.
        To fully answer your question, after overhauling my diet I noticed a slight bump in improvement within days and an overall beneficial impact within weeks. Depending on how your current diet is, it may be a little rocky during the purging process of all of the toxins in your system (which is usually the first week or so). A total diet modification can be really difficult, (unless you have the mindset of a dedicated ninja warrior) so it’s really important to figure out the small (stress SMALL) portions of “bad” food your body can tolerate, as well as how often in order to appease your mental satisfaction. My personal creed is to eat well 90-95% of the time, and indulge 5-10% of the time – the “time” part being contingent on how many meals and snacks you eat a day. That small percentage for me usually accounts for a cup of hi-octane coffee with sugar, and some bittersweet chocolate a day. [Cheat sheet: Going half-caff on the coffee is a way around the limitation of just (1) cup per day. Using almond milk and/or coconut milk products is another way around the dairy limitations. Limiting alcohol is really up to the person, but when the occasion calls I use club soda instead of a sugar-based drink as a mixer for a cocktail and limit wine to 2 glasses; also avoid beer for the double whammy of being an alcohol and having a gluten element.]
        When the supplements were added, my energy levels were increased and the pain affliction was decreased even further – this however took at least two to three weeks to really get into my system and affect a lasting change. At first I didn’t think they were doing anything at all (except becoming a wallet leech), until I realized that I wasn’t running out to the pharmacy to refill a prescription or pick up more ibuprofen.
        I hope this was of some help, and again apologize for the late reply. If you -or anyone reading this- have a hard time getting started, I would be happy to post my diet and supplement regime that can be used launchpad towards a better feeling direction – just let me know in a response to this post. Nutritionists that are conscientious of Endo, can also be a very valuable resource and aide in developing a regime that would work best for your body as well.
        Best of health and wellness to you!

  12. Jacklyn Donnelly

    I also suffer from endometriosis. I had my first laparoscopic exam when I was 16 and finished school homebound due to missing so much school from the pain. I just had another laparoscopic exam December of 2013. I don’t feel any relief from the exam and the endometriosis being burned again. I have it my lower back, behind my rectum and through out my pelvic area. I am prescribed Depression and Anxiety meds to help with the mood swings from my hormones and also hydrocodone and 800mg ibuprofen for pain. Due to my endometriosis I suffer from hyperglycemia, mood swings, severe migraines that last 2 days before my period starts and when I ovulate, periods are extremely heavy for 7-11 days, I suffer from anemia, pain during intercourse, rectum pain every now and then and due to the endometriosis being around my lower back and rectum it causes extreme tailbone pain and swelling to the point to where I saw a colon and rectal surgeon. I have seen so many Drs. and tried so many different things to relieve the pain but nothing helped except a heating pad on my back and pelvis with a pillow on top for pressure. I suffer from extremely sharp pains and sometimes duel achy pains that start from my hips to me knees. My choices since I’ve been 16 is to have a hysterectomy or to be put through early menopause chemically. I chose neither and had a beautiful 4 year old boy. I have been smoking since I was 16. it has helped me so much better than any medications I have been on. The pain is still there but does not put me on bed rest for two weeks.

  13. I have come across your post as I am currently going through the motions of being diagnosed and ruling out everything else before I have the laproscopic examination. All of my symptoms match up to yours and reading it has made me feel like less of a drama queen. I have had to take a lot of time off work due to the crippling pain and having to crouch down into a ball instantly whenever the pain hits. That’s on top of the now constant ache. I am being treated with a cocktail of painkillers and anti-inflammatory drugs but nothing seems to work. The unhelpful comments comparing it to ‘bad period pains’ make me want to scream and the stories of people being diagnosed but living happily, symptom free, fill me with jelous rage and a feeling of ‘why me?.

    To start with I was faced with other possible causes and there was a lot of talk of tumours and cysts. I was terrified. So once I was told the ultrasound and blood tests appeared clear of anything cancerous I was overjoyed… for about a day. Then I realised that I was still in horrendous pain and I was still getting sent home from work 4/5 times. I was told that the most likely scenario is endo and that was much easier to treat and deal with. Then I started doing my own research and this just does not appear to be true.

    I have some friends who smoke weed quite a lot and one day I was just in so much pain that I thought ‘why now?’ it relaxed me for the first time in 2 years and I now regularly use it as a way to deal with the intensity of the pain as well as a way of encouraging me to eat. It is very difficult to eat when I am in pain and vomiting.

    Anyway, It is just refreshing to read such a well written and relatable piece on the plights of endometriosis and the use of marijana in helping live with it. I was beginning to feel like a bit of a hopeless waster. Unfortunately, being british, there is no such thing as ‘medical marijuana’ and so I guess I still class as a bit of a scalliwag.

    Thank you for sharing your story.

  14. Im 18 and im on my way to discovering and copping with this horrible pain that I’ve been having every month since I was 16. My own mother never really gave me the opportunity to have normal check outs by doctor’s. I have really only been to the doctors for a bad case of bronchitis, shots, and poison oak. I never even had a papsmer. So I honestly, im scared and in pain. I dont know who to talk about this to. I had to find out what was wrong with me by myself. I didnt even know what endometriosis was before 4th of july, let alone spell it. Im so scared. And I really dont know what to do. I’ve had an appointment but this hospital wasn’t the best, they quickly got me in, then shoved me out. I’ve had a sonogram done. But nothing. I dont know what to really do from here. Do I keep trying to figure out if this is that. Or just keep trying to live normally with it? I need an older experienced person with advice.

    • Firstly, you are not alone. Secondly, from a place of deep empathy I will try to give you the best advice my heart and brain can think of.
      Whether or not you have endometriosis, or another underlying issue is something a medical practitioner should diagnose for you – don’t ignore it. If you are in pain, you need to know why… so “trying to live normally” is not a good option when you don’t have any answers or information. Sometimes parents aren’t exactly tuned into their daughters and rather believe everything is a-okay, but it really is up to you to openly talk and persuade your mom to see a reputable gynecologist (especially if she is covering your medical expenses).
      When you’re 18, you really need a strong advocate for your health – a mom is usually a great candidate for that role. Some doctors can be dismissive or arrogant, so having someone on your team who will rally for you is extremely invaluable. If you’re having trouble communicating with your mom, maybe a third party can help in a sit-down scenario; ie: another family member or family friend your mom respects enough to really listen to. But, you have to start the conversation first by being vocal about what is going on with you, including how scared you are; no one listens to the voice they don’t hear.
      If you happen to be on your own financially and have your own medical plan, (like I wrote, “if”), it’s still extraordinarily beneficial to have an advocate who can help you steer through the medical maze of deaf doctors and ill-advised medical treatments. You need somebody on your side, girl – especially when you are feeling as scared as you are. Don’t let anyone mow over you, or your physical and emotional feelings – expressing yourself is very easily said as: “This is how I am feeling and I need help – end of story.”
      Below are some websites with a TON of info on endometriosis – if you think you are suffering from endo, maybe print some stuff up and share it with your mom to open her eyes, and mind. It took years for my mom to come around, and until she did I was considered: “a lazy kid who whined about getting her period”. I really needed her help around the time I was your age and it sucked balls not having her support; (if it weren’t for a family friend who really listened to me, I never would have found a specialist who could help me; thing is, I had to speak up and out first). The irony here is that as my situation unraveled, I found out that my mom suffered greatly too, as did her mother, and because there was very little to zero attention years ago on endo, women suffered in the dark and thought that it was just another notch on the belt of plight for us. I will tell you this now: this is not how things are supposed to be and you should not have to continue suffering, my dear.
      This is your health and your body, so be open and honest about what is going on – otherwise you won’t get the treatment you deserve and rightfully need. Trust me, ignoring it won’t make any of what you are dealing with go away. Think about it this way, the sooner you know what is going on, the sooner you can address it and remedy it… and the sooner you may smile about feeling better, or at least have the hope that feeling better is in the horizon for you. I will say prayers and keep my fingers crossed for you.
      – Endometriosis Association: http://www.endometriosisassn.org
      – Endometriosis Foundation of America: http://www.endofound.org
      – Endometriosis Research Center: http://www.endocenter.org

  15. Hi I’m Tina im 20 years young and I have endometriosis All thanks to my mothers jeans and her sister who all have mild to Sever endo i am going under the knife in a couple days and hoping pain will go AWAYYYY but my pain varies from strong killer ASS PAIN to its ok pain but ive been experimenting with medication and the only pain relief is mixing 2× ponstan and 2× codapane forte the pain goes away realy well but maybe not everone and if i want to goo the extra mile i have a joint of weed a hot pack and a bedddd but that means you cant work and when you have to take a couple days of every single mounth no one seems to understand But ive been told by DR that if you do try and get pregnant the endometriosis goes away but thats depends on how bad it actually is and for the sex its sucks big time deffently not enjoyable any more and your partner has to suffer too but i hope it goes away and i deffently recommended for all you youngsters to get checked out from your gyno whilst your still young because it deffently gets worse as you get older good luck from australiaaaaaa…..

  16. This sounds all too familiar. I love your writing style. I was able to laugh through the pain. Thank you!! I hope you’re continuing to heal!

  17. This is brilliant thank you! You hit the nail on the head!!

  18. I’ve been through just about everything on you list of treatments excepet the diet change. Although, in gluten intolerant and don’t drink coffee so that’s a start…
    Anyway, I was wondering if you have an opinion about indica versus sativa for benefits regarding endometriosis pain. I feel weird asking my L.P.S. (in Colorado) because they’re all dudes and know dick about this stuff.
    I really hope to hear from you.
    Thanks,
    Kathie

    • Thanks Kathie for stopping by – hopefully I’m more helpful than nonsensical for you.
      Cutting to the chase: I personally opt for a hybrid (but my opinion is also worth a grain of salt). The choice to use a hybrid however was based on dealer credibility and what they had available – not because an experienced practitioner guided me to use the “right” strain. If NY wasn’t in the damn dark ages either on this subject, I imagine women would get to meet said experts in beautiful solarium’s littered with silver platters of dried bud to sample…. alas, my solarium is dirty alley behind a dumpster.
      Back to the point and feeble attempt at helping you out here; I have seen more varieties of Indicas and Hybrids recommended/listed for the combined treatment of cramps AND inflammation, over Sativas.
      Leafly.com has been a great tool for research and info – try going to “Explore Strains” and apply all the filters you want to find a strain that fits the bill.
      Hope this helps and I sincerely wish the best of wellness and well being to you!
      Namaste

  19. Thank you! I’m dealing with a pain recurrence and dread the Vicodin zombification. I look forward to perusing that site!

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