Finding Ways to Accept the Return of Endometriosis

Finding Ways to Accept the Return of Endometriosis

Dachshunds & Duvets – a column by Jessie Madrigal-Fletcher

I had laparoscopic surgery almost 10 months ago. The first period after surgery was quite horrific, which was to be expected. Then, the months that followed I couldn’t believe my luck: Having my period didn’t mean losing days out of my life. No excruciating flare-ups, just mild pain. It was a kind of discomfort that doesn’t really get in your way. I was elated and full of hope. 

Then, slowly, as the months progressed, not only did my periods progressively worsen, but also new symptoms and sore spots emerged. Every so often, and without warning, I feel a sharp pain around my right ovary that stops me dead in my tracks, preventing me from even being able to walk. The pain can last up to an hour and leaves me on the verge of collapse. This week, I am seeing the specialist who performed the surgery, and it all fills me with a strange sensation.

Staying positive
Staying positive, head high. (Photo by Jessie M. Fletcher)

Laparoscopic surgery, whether involving ablation or excision, is just one of the few treatments doctors offer to women with endometriosis. It’s exceedingly invasive, requiring a general anesthetic and a post-op recovery period that can last months, depending how much of the adhesions are removed. The issue is that, just like with any other surgery, for the body to heal, scarring must occur. Yet for endometriosis sufferers, this is like adding gasoline to a fire. Adhesions already plague our body and multiply at a perilous rate. This turns something considered an effective line of treatment into something that could also be detrimental to our health.

A while back, I accepted that this illness was here to stay, so I’ve become a champion at managing its ups and downs. But whenever medical tests and invasive examinations creep up on the horizon I feel rightfully uncomfortable. I don’t regret my surgery. I was suffering incredibly, and needed someone with some idea of what they were doing to take a good look at me and attempt to improve my life. However, I am now faced with the fact that not only does my endometriosis seem to have returned, it has done so with a vengeance. 

I’m waiting for anger to kick in, to have a bit of a breakdown, but it’s not happening. I also don’t want any more laparoscopies, which will surely put me at odds with my doctor. So, I’m in a bit of a limbo state, trying to come to terms with it all.

Rather surprisingly, I think I’m OK

So, I ask you, fellow endo-warriors, how has your experience been after laparoscopy? Did it come back? If so, how are you managing it?


Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease
Jessie is a writer living in the South of England. She was diagnosed with complex endometriosis in 2016 after two decades of chronic pain, PMDD, and suffering from other health issues since the age of 12. She is a lifestyle and science writer, but has also produced several screenplays and short stories. She is also a lip-synch assassin, a coffee snob, and Madonna’s biggest fan. In 2019 she ran The London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of anyone diagnosed with this disease

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  1. kelli says:

    I have had two Laparoscopies. I had one in April of 2016 and did not have any relief from that surgery. My health got very bad having cysts rupture monthly and missing work and life. I had another surgery in September of 2017 and things have improved vastly. It is hard to know that I am living with a disease that will require more surgery that comes with a hard recovery, but knowing that my quality of life will improve vastly even for a small window after surgery is worth it for me.

    • Thanks for reading and commenting Kelli. It’s great that surgery has worked out for you. It’s all trial and error, isn’t it? and what works for some, doesn’t for others… but when it works, it’s priceless. Getting your life back, even a little, is a huge relief x

  2. Maddy says:

    Interestingly enough, I had my laparoscopic surgery in August of last year as well and have had the same experience of horrific first period after surgery —> unbelievable relief and manageable pain —> now the old pain is coming back with a vengeance and the ovarian stabs are far too familiar. What now?

    • Yes, same thing here. It’s the name of the game, being a chronic disease, but it takes a lot of deep-breathing and adjusting to the pros and cons of every treatment and surgery. Sending you positive thoughts, and thank you so much for reading and sharing your own experience. It’s a tough disease, but one made easier when you realise you’re not the only one going through it.

  3. Kristen says:

    After my laparoscopic surgery I was fine. I had to stay on my birth control pill so the endometriosis wouldn’t keep growing. So now almost 5 years later I am still on the same birth control pill I’ve been on since I was 18. I am now 39. I’m not in any pain, but being on this pill is the worst feeling I feel like a ticking time bomb. I just had my gallbladder out last year as well. The Dr said it was the worst gallbladder he’s seen and looked like a 90 year old persons. Also my birth control pill could have killed my gallbladder as this is a side effect. Is it correct that taking a hormone is the only way to stop endo from growing and spreading to other organs? Other hormone options do not sound any better to me. So I’m just waiting for them to come up with some more natural way to help this horrible disease. Also my gyno does not seem to have any answers for me at all. Just to maybe try to Lupron shot? It is all very frustrating. After your surgery you said your in pain. Are you on any type of hormone? Thank you. Any information you could share with me I’d really appreciate it.

    • Thanks for reading and commenting Kristen. I’m still on no hormonal treatment, as my surgeon decided that after surgery, we would just let things be and see how they progress. I don’t know if hormonal treatment is the way forward. I saw my specialist last week and he makes the distinction between pain due to scar tissue build-up and endometriosis. All I know is that it hurts sometimes 😉 Are you able to research any endometriosis specialists that could see you? It’s always worth getting a second opinion. Sending you a massive hug x

  4. Eden Eyal says:

    Thank you for writing this! You all talking about your issues legitimizes what I’m going through. I am only 17 and had a laparoscopy and Mirena IUD put it in last year. The process I went through is very parallel to yours: my symptoms were numerous and severe, even with birth control. I had the laparoscopy and the first period I had was horrible. It slowly got better until it was nostalgically manageable. But now, my heavy bleeding and array of pains have been creeping up on me and I’m worried it’s only going to get worse. I’m glad this website exists and I have learned a lot about my disease just from one visit. I really hope you can figure out a way to control your symptoms without the laparoscopy. Thanks again for taking the time to share your experience!

    • Hi Eden, thanks for reading and taking the time to share your experience. And I am so happy that you find the work we do helpful… it’s all me and the other columnist behind Endometriosis News want to do: help and guide others through our own experiences. My experience with endometriosis is so variable over time. Some months I think I’m endo-free and able to function like anyone else, others the pain and suffering comes back with a vengeance 🙂 Stay strong x

      • Manasa says:

        Hello thanks for posting, i have scar endometriosis. post C-section, sometimes the pain is just horrible, and yes it comes without warning. its the exact same description. i see there are people like me , suffering for more number of years, my endo is 4 years old.
        at lease i know that, there are people battling this just like me. and i too have learned to live with it.

        • STEPHANIE says:

          Oh my goodness, I’ve felt like the only one with this issue! I’m the same way, mine developed from a c section scar. Mine is also 4 years. May I ask a question, if it’s not too personal, have you had any more children since you’ve had it?

      • Racha says:

        Same here, thought laparoscopy was a solution apparently it’s back after 7 months and now about to breakdown, the pain I had was horrible and not yet sure what’s the way forward until I see my doctor tomorrow.

  5. Heather says:

    I was diagnosed with endometriosis 23 years ago. I had an endometrioma removed and ablation back then. My pain worsened. I went through numerous rounds of artificial menopause with both the pill and three courses of lupron. Lupron made me feel insane, put hair on my chest and made my voice deeper. I wish I was kidding. I tried for 15 years to get pregnant and had given up when I miraculously had a child. I had a Mirena put in – it was great other than the excruciating placement process for about 3 weeks, then the pain was absolutely intolerable and I had to have it removed. Since then I just take naproxen 500 and deal with the pain. The doctor’s are frustrated that I don’t try yet another intervention (I have a large cyst that’s at risk for torsion), but it’s been more aggravation and pain than helpful.
    On a side note, I have just learned that I have neurological findings that may be MS. I heard it was common with endometriosis and interstitial cystitis. Makes me wonder if all the hormonal disruption due to interventions aren’t the culprit rather than genetics.

    • Hi Heather, thanks for reading and taking the time to share your experience. It sounds like you’ve had quite the harrowing experience with this illness, and you are carrying on with our life, which makes me admire you so much. I hope that things get better, and I completely understand why you would be reluctant to have more surgeries. Take care of yourself

  6. Elaine says:

    I first got obvious symptoms of Endometriosis in 2002, but I’d had heavy and painful periods as a teen, which were just glossed over by medics. For nine years from 2002 onwards I went back over and over again to my GP who was very unsympathetic and ignorant – it took until 2006 to refer me to a Gynaecologist! Even then, Endometriosis was not even contemplated. I was, over the course of the nine years in question, told I had everything from Irritable Bowel to possible Fibroids. It was even suggested the symptoms were all just “normal period pain” and that I was actually suffering “stress”. I was told my symptoms were “in my head! HOW insulting is that!

    I had been put on the Pill as a teen for my period problems – first Dianette, and then Marvelon, neither of which worked! But my symptoms calmed during my twenties, and did not return until 2002. With a vengeance! I had bloating, cramping, anaemia, heavy and painful irregular periods, stomach pain, lower back pain, vomiting and diarrhoea – worst around my period time. So, my GP suggested the Pill again (No way!). They tried Mefenamic Acid to reduce heavy periods – it did a tiny bit, but all the other symptoms remained. I was given Iron Supplements for chronic anaemia (no surprise that I had that!). Then my Gynaecologist (who was bloody useless, and often off sick because he was an alcoholic – he later died of liver failure after being sacked by the hospital) suggested the MIRENA Coil. It was AGONY having it inserted. After less than 6 months I insisted it was removed, because the pain it caused was terrible, and I could literally FEEL it inside me. ALL THIS TIME, NOBODY HAD EVEN BOTHERED TO TRY TO GET ME A DIAGNOSIS!

    By 2010 I was desperate, so I took to the INTERNET to Google my symptoms! The computer suggested Endometriosis and the more I read, the more it sounded right. So, I went back to the GP and DEMANDED treatment.

    I had my first Lap surgery in early 2011. It was done in Blackpool (who, by the way, are NOT qualified to do Endometriosis surgery, and are NOT registered Endometriosis specialists). The whole thing was a nightmare! It is clear they DID find Endometriosis – but they never told me where, or how much. Instead, they just did a superficial job of trying to laser ablate it away. When I came round from the anaesthetic, I was told that “all my Endometriosis had been removed”. At that point, I was hardly listening to anyone, as I was vomiting profusely. The hospital DISCHARGED me that same day – STILL VOMITING. I had absolutely NO follow-up from them. I had NO idea what they found, where, or how much – NOR how to manage my recovery, or who to see if symptoms came back.

    Less than a month after this surgery, symptoms DID come back – so badly I ended up in A&E! I was doubled in pain to the extent I could not walk. This happened THREE times in total, and each time I was told it was “muscle spasms” somewhere in my back. I was put on Oral Morphine (so tells you how bad the pain and symptoms were). NO Gynae investigation, NO scans – NOTHING. This WAS Blackpool again!!

    Late 2011 I took to Google again, to look up Endometriosis specialists. I found one and DEMANDED to be referred. I had my second Lap in late 2011. This confirmed I still had Endometriosis – and that it was of the severe, deep infiltrating type. The surgeon in Blackpool had completely missed this. In fact, he had left Endometriosis nodules buried deep under scar tissue in my left Utero-Sacral Ligament. Scar tissue caused by HIS SURGERY!

    2012 saw another Lap. More invasive this time – radical excision surgery, that required a bowel prep. Not nice! Afterwards, I had a sort of fit whilst recovering – my lower body stopped working, and I felt drowsy, and so sick I was projectile vomiting. I could not pee at all. The hospital had been planning sending me home, but I remained in for an extra three days, I think. I was SO ill I cannot remember!

    Recovery took some time (after the first 2 Laps, I had been up and about fully in @ three weeks). I am not naturally a lazy person, and nor do I like to make a fuss. My husband says I tended to get up and about too soon – I remember doing housework within the first week after my second Lap! This time, it was about 6 months before I felt fully right. But, then, I had an interval of time which felt like BLISS! No painful and heavy periods, no cramping or upset stomach. No bloating, or pressure feeling on my bladder. This lasted over 12 months. It was great!

    My only concern was that the specialist who had done the excision kept suggesting during the follow-up appointments that I should go back on the Pill. This worried me, because I wondered why I would need to. If my Endometriosis was gone – and I had been told that everything he could see had been removed – then surely I did not need treatment like the Pill?

    2014 saw a return again of symptoms with a vengeance. I had another Lap, and MRI scans. I’d also had a colonoscopy and hysteroscopy. Not much said after all of this – other than that if I had more surgeries, I risked damage to my bladder and bowel. I had another fit sort of thing after this Lap, too – unable to pee again, vomiting etc. The MRI showed damage to the base of my spine, and to my left hip joint. Kind of maybe makes me think this is why no more surgery was recommended!

    So, now I am back with symptoms of cramping, painful and heavy periods, upset stomach, bloating, front pelvic pain, lower back pain on left side, pressure on bladder, vomiting… ALL pretty much the same symptoms I started out with years ago! And, yes, they are worst around my period! So, I reckon the Endo is back… that’s if it ever went away!

    I am back waiting to see the Endometriosis specialist (another new one! That’ll be the FOURTH!!). Back waiting to see the Gastro team! Back on Mefenamic Acid. Back on Iron Supplements. And now on Buscopam!

    How do I deal with all of this? Heck! It’s my life! I just have to put up, shut up, get on and live it. I have held down a full-time job (up until having 5 surgeries). Even during the surgeries, I managed to complete a University Postgraduate Course in Psychology, getting a MERIT! I am now doing further Postgraduate research, and manage the symptoms as best I can. My Tutors, and some fellow students know I have Endometriosis, and generally, they are pretty supportive. I still get the odd person who makes crass comments like “but you don’t look ill!” or “isn’t that just period pain!”. My own MOTHER-IN-LAW is the most insensitive – she once dismissed my Endometriosis as “trivial”! Still, you get muppets everywhere in life!!

    My decision is NOT to let Endometriosis stop me. NEVER! If I want to do something, I will. If I try to achieve something, I will. Simple as! Even if, after the new investigations I am waiting to have, I get told it’s back, so be it. Or, worse, I get told I have something else, like Crohns or Caeliac disease, I’ll learn to live with it. I have met some moaning, whingeing fusspots in life (Mother-In-Law being one) who make a drama out of even a sniffle. I DO NOT wish to be like that! I have also met some amazing people who I admire till the day I die.

    What gets me through is the knowledge that I had a close friend from School, who was diagnosed with Cancer the year before we were due to go to University. She took a “gap year” – not for fun, but to have Chemo. Then, a year later than me, she started University. Imagine that! She was a beautiful, bright, super fun young woman who I reckon deserved the very best in life. But she did not get it. Her cancer came back, and she was diagnosed terminal when aged only 21. Even though she KNEW she was dying, she still tried to complete her Degree course. She died when she was 21 (I have tears in my eyes writing this), and was so calm and courageous, that she makes my fight with Endometriosis and Anaemia seem like NOTHING.

    I miss her. It is in the memory of beautiful Louise that I have decided NEVER, EVER to give up, but to fight until my last breath for the life that I want – Endometriosis, or not!

    • Thanks for sharing your story Elaine. Like many of us living with endometriosis you have been through so much. It’s a daily battle, but I do think you have the right attitude and a strong fighting spirit. Reading comments like yours is super inspiring, so thanks for taking the time to share your own experience.

  7. S.E says:

    Hello Jessie & all other members here!
    I am writing this for you, as I can deeply feel your pain..
    I am a Muslim married woman in my late 20s from Pakistan.
    The story starts after my marriage with sharp stabbing pain in my pelvis, prominantly during periods, we consulted medical help but it took a few months for the final diagnosis.
    As a result, I also had 2 laparotomies, one in 2014 (right 1 year after my marriage) and the second in 2016 in which my left ovary & tube had to be removed in emergency as during surgery doctors found the internal condition of my pelvis at it’s worst, especially at left side, however the right ovary & tube were somehow conserved.
    In-between I went through various medical treatments, even IVF (which was abrubptly cancelled due to flaring of endometriosis), as the doctors always recommend me that getting pregnant is the only way I could get relief from endometriosis.
    Sadly, the pain of endometriosis subsided just for 2 or 3 months after my surgeries and soon came back with more revenge.
    Nowadays, my right and only ovary is aching and the only cure is getting my whole right side removed too!(which we are delaying and waiting for any miracle to happen)
    My husband and I always wanted to be parents of so many babies..but maybe this medical condition of mine has some other story for us.
    I wish all women in this world having any kind of chronic illness, especially endometriosis, gets a complete cure to be free of the deadly pain, also to be a mother of so many beautiful babies (Aamen).
    Smiles & Good luck to all of you!

    • Hello S.E thanks for reading and sharing your experience with us. The more we talk about our experiences, the more awareness we are raising 🙂 You have been through a lot and I have so much admiration for you.

  8. HS says:

    Jessie Great work. I have a similar situation I had surgery last year in Sept 2018 Endometriosis was removed by Laparoscopy. After the surgery, I went normal and looking some fertility doctor as per my Surgeon but I decided I will not take any IV procedure except some natural approach but This afternoon I went to ER hospital due to lower abdominal pain and I brought my all old reports with me. I did not get any GYN Specialist in ER Hospital but one of PA she is a family doctor were available and she order CT scan and blood work and after the CT scan she suggest me follow up with Endometriosis surgeon it seems like Endometriosis back I don’t know how it possible in 4-month Endometriosis back or it was not removed properly at first surgery anyway I am going back to Johns Hopkins Hospital where my first Laparoscopy. I will keep you update all.

  9. Catherine says:

    I had a laparoscopy 10 months ago, the surgeon said she found mild endometriosis under my womb on the left side. For months after I was essentially pain free (other than ‘normal’ cramping around the time of my period). Over the last 3 months however the pain has been increasing. I am now in agony and have been for the last 4 days. I’m finding it hard to understand how it could be endometriosis again, and if it isn’t what is causing this pain? This time the pain has occurred around ovulation which hasn’t happened before. My pain is always only on my right side and always has been but the surgeon said the endometriosis was found on the left side. I’m just really confused right now as to whether this is endometriosis and its come back or if it something else entirely. Would I be in this much pain with only a mild form of endometriosis? Feeling very fed up at the moment as having to cancel plans due to the pain.

    • I am sorry you’re in pain Catherine. The tricky thing with endometriosis, is that the amount of adhesions can have no correlation with the discomfort a patient feels, meaning you may have just a small amount of endometriosis, and it can result in a world of pain. The same applies the other way around. It could be just scar tissue from your surgery, but the only way to figure this out, is to speak to your doctor and see if they can perform some imaging tests. If those shows nothing, they may advise you to have another laparoscopy. That was the route I was advised by my GP. I hope this helps. Thanks for reading and taking the time to comment.

  10. Aubrey says:

    It’s so nice to read other peoples experiences. I had a laparoscopy about two months ago and was diagnosed with endometriosis. I was experiencing extreme stabbing pain for over a year with years of unexplained infertility. I was so relieved to finally have an answer and I was really hopeful after surgery since it seemed to go so well and my recovery was much faster then expected. I had my first period a few weeks after surgery and it was absolutely horrific. Since then I have been bleeding for 6 weeks! I emailed my doctor and she wasn’t concerned. I know spotting was to be expected but I wasn’t ready for the never ending period. It is such a frustrating thing to go through and the thought that this is a chronic condition makes me feel a bit hopeless. Has anyone had this type of experience after surgery?

    • Hello Aubrey. The first period after laparoscopic surgery tends to be quite bad, yes. Non-stop bleeding is something many of us have suffered from (me included!), but it needs to be assessed by a doctor. Insist that your doctor takes a look at you if you can. Alternatively, is it possible for you to get referred to an endometriosis specialist? I am sorry you are going through all of this. You must be so exhausted too. I hope you can get some answers and some relief soon.

      • Carrie Broadway says:

        I had my first surgery November 2019. I had been in pain for months nothing helped. I didnt know what was wrong and all of the sudden the right side of my stomach was swollen. I decided after 6 plus months to go to the doctor. My cyst ended up being the size of a grapefruit. And there were a bunch of smaller cysts on both sides. I felt so much better but in the past few weeks the pain is returning worse than ever. My back pain is intolerable. It makes me depressed. I dont know how to handle it. I still owe bills from the previous surgery. Will it get worse from here? How do you deal with living the endometriosis?

        • Hey Carrie. All I can say is that I hear you, and I feel what you say. I can very much relate. I take each day as it comes, I really can’t do much more than that. Sometimes my body behaves, the disease cooperates and all is good. But it is a daily battle. For back pain though, yoga helps a lot, and pilates too. But some days it’s just there, no matter how much care I take. So I surrender, lie down, and apply hot or cold to the area depending on the day. All my love x

        • Dawn says:

          I have a similar situation to yours. I had exploratory lap and excision of right ovarian endometrioma that was 4-5cm large September 2019. Right ovary was also stuck to side wall. After reading surgery notes, all endometriosis was cauterized and endometrioma was excised. Felt great for maybe 3 periods. Then, cramping and heavy periods started again. I am hormone free as I don’t like what they do to my body. I’m very very sensitive to even probiotics (cystic acne breakouts, weight gain, etc.) Anyway, I have now recently had a terrible “side stitch” pain on the right side for weeks and the pain is very reminiscent of the endometrioma pain felt before. Is it possible for a return of endometrioma on the same side?! Everything I read says “likely not”. I have a pelvic ultrasound on Monday and actually hoping it shows another endometrioma so I can have it removed and possibly the ovary too. Just get rid of the problem all-together. No kids, not planning on it. I’m only 36 otherwise I would say just remove it all! But then, I’m worried I would have to do hormone replacement. No! Not doing it!

          • I can so relate to everything you describe Dawn, I feel every word you’ve typed, I truly do. Good luck with the scan on Monday and everything it involves. Thanks so much for reading and sharing your own experience.

  11. Nicole Ewing says:

    Hey Jessie, I’m
    Nicole, a yoga instructor and personal trainer. I’ve suffered with endometriosis for years before having a diagnoses last November and surgery. I had to have my appendix removed and part of my colon along with half of my right ovary. I was shocked. I had no idea it was that bad. I’m still able to have children so they say due to my tubes being unaffected but we have had no luck. I think it’s partially because my hormones have been all over the place and haven’t had much of a sex drive. I’m 33. I know my clock is ticking. The stress alone of that probably dampens my drive too! My periods have gotten progressively worse over the year. I’m currently suffering right now. I get sharp pains. I get more depressed than I used to. I hate to think it’s growing back so fast. It’s like in my head. I really wish it was curable and we could have it removed and then move on. My hopes are to have a baby or two if possible and then have a hysterectomy. Thank you for sharing your story!

    • Thanks for reading what I wrote, and sharing your own story. I do feel you. I’m also a yoga instructor and high-fiving you from afar 😉 Having such a physically-active job, whilst living with this disease, makes you akin to a superhero, I hope you know that 🙂 Endometriosis is all-reaching… it affects so many aspects of our lives. All I can say is that it will get better, you will find what works for you. Bad days will still come, but better ones will follow. Living with this disease is akin to running a marathon, a slow one, with obstacles. Everyone else gets to get on with their lives, but we have all of these objectives we want to reach, and endometriosis keeps tripping us up. Therapy has done wonders for me (it’s ongoing but I’m ok with that). Stress and worry over this disease can be so disrupting.

      Regarding pain, do you have a TENS machine? That has done wonders at reducing my pain levels. I’ve even carried one when teaching Yoga and it helped me get through the class.


  12. Carla J says:

    Hi Ladies, I write this as I’m sat in scolding hot bath trying to control my pain. I was diagnosed with stage 2 endometriosis and had my first Lap in July this year, I’m due to start IVF in Nov/Dec, to much damage has been done to conceive naturally. I’m on a period now and nothing has got better, I’m in so much pain. Nobody knows what it’s like, work doesn’t understand nor my boyfriend. I’m preying to fall pregnant and hopefully that might help or I’ll have a hysterectomy. Thanks for listening x

    • Tanisha Williams says:

      Omg thank you sooo much for writing this post. I had my surgery in June of this yr nothing has gotten better and i keep hoping and wishing every month gets better im currently on my cycle now and it was extremely hard for me to get out of bed this mornin to wrk (and im wrkin from home) i think i just had a breakdown moment i cried and cried and still cryin bcuz im in sooo much pain i called my doctor they schedule me to get nxt week wednesday but i was Prescribe so 800 mg of Ibuprofen which i have to take two bcuz one just doesnt cut it anymore. Im so emotional and Disappointed because my doctor assured me that the surgery would have me feeling 10xs better and i have not gotten that feeling yet. The nurse Practitioner at my doctors office mention that there is a new medicine for Endometriosis that she would like for me to try when i come in next time. I have concerns about that idk what type of medicine it is what its side effects are of anything of that sort.. im just so overwhelmed & confused at this point. Thanks for allowing me to vent…..

    • Erika L says:

      I had a total hysterectomy and oophorectomy in 2013 due to stage 4 endo. In 2017 I had excision surgery. My pain has never really went away and I’m concerned that I need another excision surgery. Before considering hysterectomy as an option to remove pain, please research because some information that I read stated that endometriosis never goes away unless completely removed.I believe that tissue can still exist, based on my pain.

  13. Elaine W says:

    My symptoms started as soon as I got my period at the age of 15. Heavy periods were the norm for me from a very young age. At about the age of 18 I knew something wasn’t right, I was regularly taking
    painkillers and often found myself curled up in a ball trying to get some relief from the pain. I met my partner while I was on holiday and moved to London when I was 19. This is when I realised that intercourse would often leave me in horrendous pain, often for days on end. Luckily my symptoms were taken very seriously by my doctor and after enduring a burst endometrial cyst, I was referred for a laparoscopy and diagnosed with Endo. My surgeon was an Endo specialist at Kingston hospital. It was only just being recognised as a debilitating disease at the time and they had all new equipment and tools ready to go. I was booked in to have laser surgery when I discovered I was pregnant. I was now 23 and overjoyed. Within the next few years I had moved back home and also had another laparoscopy only to be told that I didn’t have Endo and I’ve never had it. My hospital didn’t have any notes from London and and my new surgeon was not specifically trained in endometriosis. After feeling confused and somewhat hurt I lived with the pain for years. I went on to have another child which was amazing. At the age of 39 I had an endometrial ablation to stop my periods. I was permanently on iron supplements to compensate for the blood loss and irregular bleeding. The ablation was also meant to help with the Endo pain, unfortunately it didn’t but more amazingly my periods stopped completely and I didn’t look like a corpse any more. This was the most unpleasant operation but probably the best operation I’ve had.
    At the age of 42 I had my Excision surgery and felt great for two whole years. Unfortunately, now 44
    it’s back and I’m back to the hospital in a couple of days.
    I don’t think it will ever go away but I know that now. I have been very lucky and supported by my partner from a young age, we’ve lived through this together.
    When I feel down I just think how lucky I am, I’ve got the most amazing kids and family!
    Yes I have Endometriosis but I don’t let it rule my life. I love my life and I can manage the pain and I can have treatment. It will take over your life but only if you let it!

  14. Terri Meadows says:

    Hello everyone! Im in week 2 of laparoscopic recovery. I started my period three days ago and the nausea is EXTREME, if anyone has any advise please this is so awful! Also, has anyone tried CBD for endometriosis pain? Thanks, -Terri

    • Hello Terri. The first period after a laparoscopy can be quite awful, especially if they removed any adhesions. I find that when the pain is truly horrible, a TENS unit helps enormously, honestly, it’s like a miracle gadget. I’ve taken CBD oil for endo-related pain, and it did help take the edge off the discomfort but didn’t get rid of it completely. I hope this helps. Stay safe.

  15. Gemma D says:

    I had larascopry surgery for endometriosis exactly one year ago after suffering from pain and fever with extreme nausea most days for a year and a half prior to the surgery. I am infertile on the right side due to scar tissue in the tube. Some of the endometriosis couldn’t be lasered off because of the positioning of it. All the adhesions were cut away and 2 patches of endometriosis were treated. The pain disappeared for the first 3 weeks after surgery but it quickly returned with the first period and has continued with every period and on random days ever since. I cannot take ibuprofen so i was taking cocodemol but it no longer works. I was due for a review in april 2020 but lockdown happened. I’m trying to cope but I’m on day 5 of being in pain and feeling pretty hopeless. I have only 1 child. I do not plan on having anymore but my doctor says a hysterectomy won’t fix the problem and could potentially make it worse. I am at a loss as to what to do next.

  16. AB says:

    Well….I relate to almost every comment. I just had lap procedure on 12/8 and have been doing overall pretty well. But I have been having some very intense pains and cramps due to my upcoming period. At least I’m off for a few days. I didnt know the first period could be bad so it was good to read all of your thoughts. I had lots of spots and scar tissue zapped during the procedure so I suppose it makes sense. My doc says my endo is mild to moderate. I hope all of you get some comfort and rest. It does feel good to know I’m not alone in all of this. People who don’t have it don’t understand how painful it is. Thanks for listening.

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