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.

14 comments

  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

  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.

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