This one is going to be quite a lengthy read, so make yourself a cup of tea and get comfy.
You may have seen a recent post of mine, A Gentle Routine to Pick You Up When You’re Battling Endometriosis, so I thought I would do a follow up explaining my story.
When I was first diagnosed I didn’t know anything about the condition so I want to raise awareness, educate, and talk about my experiences so far. Additionally, I’m hoping this helps any one else going through the same battle or anyone who’s curious to know what the laparoscopy is like.
Endometriosis is a painful condition where tissue grows outside of the womb, it can appear in many different places including the ovaries, fallopian tubes, inside the tummy, around the bladder or bowel. Month after month, the tissue doesn’t shred and leave the body properly, it builds up and causes an endless amount of pain, heavy periods, bloating and can cause problems with infertility. It’s a long-term condition and sadly there is no cure for it. However there are hormone medications, pain relief medication or you can have a laparoscopy performed which will help ease pain and other symptoms for a while. As there is sadly no cure, the tissue will start growing again and repeated surgeries may be needed in the future.Endometriosis depends from person to person but the main symptoms to look out for are painful heavy periods, lower back pain, pain during sex and bleeding in between periods. It’s really hard to diagnose and so hard to figure out whether you have it or not, so I would advise all ladies to keep track of your periods and write down anything unusual happening. There are tons of apps you can download to keep track.
There was one day in particular that really stood out to me and identified the problem.
I woke up in a huge amount of discomfort and pain, I had a sharp jabbing pain in my stomach and I felt really light-headed. I waited around twenty minutes for it to ease and then managed to roll myself out of bed. I started getting ready for work and then I collapsed on the floor and was viciously sick a couple of times (such a lovely sight I know). My body just went into shutdown mode, I couldn’t move for about an hour and I was screaming in pain.
Luckily Joe was still at home and he came rushing through into the bedroom to help (he was an absolute hero cleaning up the mess and holding my hair back when I needed to be sick, such a babe lol). He insisted that I didn’t go into work and also called my doctors to make an emergency appointment.
After speaking to a doctor I hadn’t seen before, I explained my symptoms and she thought it could be endometriosis. So having someone take me seriously was a huge sigh of relief.
From that day, she referred me to see a specialist. I went for a few appointments and then I was referred to the hospital were they suggested I should have a laparoscopy (key hole surgery), as the only way to truly identify endometriosis is to have an operation. Once identified, the surgeon will either cut or burn away the endometriosis with a fancy laser.
Before going ahead with the operation, I had an ultrasound and I was told everything looked fine, normal and that I didn’t have endometriosis. But I didn’t feel ok, why was in so much agony all the time? I remember coming home confused and in tears not knowing what to do. Thoughts flooding through my mind, should I cancel my operation? What if I have the operation and they don’t find anything? Maybe this is normal and I should just suck it up.
I just knew something wasn’t right, the pain and periods were NOT normal, so I decided to go ahead with the operation back in early 2015, and I’m really glad I did.
Usually with a laparoscopy, you have the operation and then you leave the hospital the same day. My operation was said to be severe, I had complications during surgery so I spent four days in hospital. It was awful, I was in so much pain, I had drains attached either side and I had to ring a bell to have a nurse walk to the toilet with me, so humiliating.
Once I was discharged, it took me three weeks to to get back to normal duties and six weeks to fully recover and exercise again. Whilst recovering, I was on a course of co-codomol for the pain and experienced heavy bleeding for three weeks (TMI sorry).
Whilst being on the pill I experienced the usual bloating and pain, however less severe to what I had before. The good side to being on a norethisterone pill was that it had stopped the heavy bleeding, for a change I was having light but still irregular periods and I was ok with that.Over time the bloating was really getting me down, my hormones were all over the place and after reading horror stories about contraceptive pills I decided to stop taking it all together.
Since coming off the pill, my endometriosis has been a nightmare. There hasn’t been a day gone by where I haven’t felt uncomfortable, in pain or bloated. The sickness came back too.
A few months ago I was being sick every single morning for about three weeks and I didn’t understand why. I knew it definitely wasn’t morning sickness, so I thought maybe it was the nightly pills I had been taking for my migraines or maybe I was just feeling really anxious. Wrong, the endometriosis devil was back in full swing.
I booked a doctors appointment and she suggested referring me to see a specialist again. After a few more hospital appointments and blood tests, I was booked in for another laparoscopy.
I was a bit skeptical of having this done again after being told last time that if they were to operate on me again it would cause more problems than good, but the surgeon insisted this would be the best course of action as there will have been built up scar tissue and it’s possible that my endometriosis causing the pain and sickness has returned and needs to be removed.
I went ahead with my second operation at the end of July and to my surprise it was severe again. I had two endometrioma cysts on each of my ovaries, on my right I had a cyst the size of a mango (how cray), the other side was a lot smaller, I had the majority of the scar tissue and endometriosis removed and they identified adhesions stuck to my bowel which they didn’t remove as it was difficult. I stayed in hospital for three days, and was so happy to return home to fully recover for two weeks. When I was discharged, they gave me a course of painkillers and injections that I needed to do for seven days.
I was also booked in to have an ultrasound but weirdly they booked this after my laparoscopy. To be honest, I’m glad they made a mistake with this because from experience I found the ultrasound to be unreliable anyway.
As of now, I’m awaiting to see the specialist again in November to go over the details of my operation and what to do next.
So that’s my endometriosis story to date. If you’re interested I can do an updated version in a couple months time to keep you guys in the loop.
From my experience it can take years to be diagnosed which is incredibly frustrating. If you’ve had an ultrasound and have been told everything is fine, don’t trust it and keep pushing for them to identify the problem.
I’ve done a bit of research and a lot of people have experienced negative ultrasounds which has put people off going for a laparoscopy. I personally think that’s awful that an ultrasound can’t accurately see what’s going on and is sending out confusing messages to endometriosis sufferers.
The only way of knowing if you have endometriosis for sure is to have a laparoscopy, which I strongly advise getting as it puts your mind at rest and the condition is officially identified.
I hope this was somewhat helpful to at least one person! If you have any questions, want to private message me or are going through something similar do get in touch :).
Let’s get social. Follow me on Instagram: @zoeyoliviablog to see what I get up to daily. You can also reach me on twitter: @zoeyoliviablog. Or, if you like Bloglovin’, I’m kind of new to it but follow me on there.
I’m currently waiting to find out if I have endometriosis so this post has made me feel so much better about everything. Thank you! Wonderful for being so honest and open! xxx
Thank you for your comment lovely :).
Hope everything goes well. It’s honestly such a huge sigh of relief when you find out – you’re like a ha, now I know what it finally is and how to make things better!
If you need to a chat about anything, feel free to email me or PM me on social media :). x
What is your social media so I can follow you? I have exploratory surgery on Friday, and I’m really hoping they can give me some answers on why I am so sick.
Hi Emily, it’s @zoeyoliviablog on Insta. Happy to help, feel free to message. xx
Thank you for writing this. I have my procedure in 2 days. Funny how I was nervous until yesterday… my best friend has had it done once a year for 5 years… she’s like a pro at it and gave me a checklist for the day and after… she had a good idea as well. Maxi pads so my pants won’t hurt so much when I go back to work. Would have never thought of that
***wasn’t nervous until yesterday I meant
Apologies, I’ve only just seen your comment now. I hope your surgery went well!
Aw, that’s so sweet of your friend to give you a checklist. Pads are a must after surgery lol!
I am stage 4 as well, and my ultrasounds always come back clear despite being full of cystic endometroisis and lesions. The only way to confirm and address it is to have the surgery. My pain is different than yours – I have crippling, burning, extreme pain on my right side only, from under my ribs to down to my hip and out through my back. It isn’t only during my cycle but my flares can last for hours, days, weeks, sometimes months and months 24/7. Before my first surgery it was chronic 24/7 for 1.5 years before someone took me seriously and suspected endo. My insides feel hard from being inflamed. I am trying the endo diet loosely to see if the bloating lessens which takes pressure off the inflammation. My pain appears to be less frequent since trying that but not eliminated. I’m trying the pill again for a brief time to give me some reprieve, and discussing surgery again. I have one beautiful daughter through IVF and recently had one natural pregnancy that ended in the second trimester. I believe my fertilty journey is done but may want to leave my heart open to the idea of another before my age goes against me. Maybe the surgery will help with that. Good luck to everyone going through this too. Be strong and don’t give up trying to be heard.
Hi Jennifer, thanks for commenting :). Sorry for the super late response – I’ve only just seen your comment!
It’s so strange that ultrasounds come back a-ok… mine did the first time too. On recent ultrasounds they did spot it though.
I’m so sorry to hear about your pain, that’s awful! Before my first surgery, I was literally in agony all the time. I couldn’t get out of bed or anything some days.
I’ve recently gone on a super healthy diet too. Well, I cut out milk and bread a few years ago, but the past couple of the weeks I’ve been eating a lot of vegetables and soups. I also exercise 5 times a week too. I have noticed that making these changes has improved my endo pain quite a bit. It’s still painful, but bearable at the mo.
That’s amazing news that you had a baby through IVF! IVF terrifies me… but I know it’s something I may have to consider in the future. x
I hope that this finds you having a good endo-day (in terms of pain management), and doing well overall 🙂
I wanted to thank you for this post. What you wrote here is almost word-for-word what led me into the doctor nearly two years ago, and led to my endometriosis diagnosis:
“There was one day in particular that really stood out to me and identified the problem.
I woke up in a huge amount of discomfort and pain, I had a sharp jabbing pain in my stomach and I felt really light-headed. I waited around twenty minutes for it to ease and then managed to roll myself out of bed. I started getting ready for work and then I collapsed on the floor and was viciously sick a couple of times (such a lovely sight I know). My body just went into shutdown mode, I couldn’t move for about an hour and I was screaming in pain.”
While I am so deeply sorry that you experienced this, your courage in sharing it made me feel so seen. I thank you truly. I am having my *first* laparoscopy in March and I am nervous, but I know it’s time. Looking around on the internet, I found you. And what a gift that was.
Take good care!
Hi Courtney, thanks for commenting!
I’m glad you’ve found my blog article to help you :).
Good luck with the laparoscopy – hope it goes well! If you need to chat about endo – feel free to contact me any time :). x
Hey Zoey, thank you so much god this post. I have stage 4 endometriosis. I had a myomectomy surgery over a year ago. I’m in so much pain today. I think from the scar tissue. It’s very upsetting. I just had an ultrasound and they found multiple cysts and fibroids. My dr wants me to try lupron before having another surgery. I’m curious, after your second surgery how are you feeling? Is it any better?
Hi Carley, thanks for leaving a comment :).
Similar experience to mine!
After my second surgery I feel a lot better but the pain comes back every now and again. I sometimes get shooting stabbing pains which isn’t ideal – but paracetamol or ibuprofen does the trick, or if it’s really bad I’ll take naproxen or co codeamol!
Haven’t heard of lupron, I’ll do a bit of research on it! Best of luck for your operation – hope it goes well 🙂
Good luck Zoe, hope all goes well. I’ve been back and forward to my doctors regarding this and kept being told it couldn’t be endometriosis as my pain was different. I had inner hip pain every time I stood on the lead up to my periods, it went after a few minutes of walking but it was really painful. X-ray showed healthy hips so they wanted me to see a specialist as they said it must be muscle damage. I knew it wasn’t because my hips were fine when my periods arrived. My period cramps shot from my stomach to my knees and knocked me to the floor at times. Tests showed I had womb issues so they booked me in for a hysterectomy which I’ve just had today. The surgeon came round to see me after the operation which took a lot longer to do as once in there he discovered I had stage 4 endometriosis so everything had to go, ovaries, tubes the lot as they were all covered. He said that would be the cause of the pain that my doctor brushed off. Any unexplained pains anyone has please push for tests. Hope everything’s ok for you xx
Hi Amanda, thanks for leaving a comment!
Sorry to hear your experience with your doctors, mine was the same. I’m glad you pushed further and found it was endometriosis.
My endometriosis has come back and I need to see a specialist to get everything removed again at some point. I keep putting it off, but need to see a doctor ASAP.
You’ve just reminded me to book an appointment so thank you for leaving a comment.
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I have been following this blog for a while now and today i felt like i should share my story because i was a victim too. I had endometriosis for 18 years and i never thought i would ever get a cure due to the terrible symptoms i had and this made it impossible for me to get pregnant even after 12 years of marriage and it was a serious issue. I got to know about Dr. LEETU who treated someone and the person shared a story of how she got a cure and let her contact details, i contacted Dr. LEETU and he actually confirmed it and i decided to give a try too and use his herbal medicine that was how my burden ended completely. My son will be 2 this december and i am greatful to God and thankful to his for medicine too. If you have (Endometriosis, PCOS, Fibroid, Ovarian cyst, Ectopic Pregnancy or any infertility issues) just reach him on (DRLEETU99@GMAIL.COM) Via Whatsapp +2348139747402 he has professional advise and a cure too.
i was 3 years ago diagnosed of fibroid and complicated Endometriosis. My medical condition was heart broken because it was causing my menstrual cramps,bloating before menstrual periods,lower abdominal pressure which result to heavy periods. I was subjected to different medications by my doctor for treatment such as Coenzyme Q10,ibuprofen, Danazol and many more. Despite my visit to several doctors my health wasn’t getting better, all they could say was surgery. At the verge of giving up, I went to the internet to search for a treatment at least. But I found a cure instead. In the internet, I read a testimony of a lady who had Fibroid. She shared an e-mail address of the Doctor. Luckily everything seemed to be okay after I took the Herbal Medicine. I wish I could say that’s the end of it because I haven’t had any symptoms since then.
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Hey my name is Tracy. My daughter is 19 years old and has recently been diagnosed with endometriosis. I honestly knew nothing about it until now but am just beginning to learn some things along with my daughter. I just saw this and was wondering if you could tell me more about this doctor and his treatment. I really appreciate your time and help! God bless!
Wow, that’s ridiculous that they were making it seem that endo can be seen on an ultrasound. The only endo they can see on a scan is an endometrioma cyst…but we all know endo is more than that.