Having a difficult time after first lap. I just want to continue my life again.

[Lejay]

I need to vent.

I had my very first lap 5 weeks ago after 2 long frustrating years of trying to find a cause of my increasing pain and symptoms. I was told that my surgery was more extensive, including endo on bladder, bowel, both tubes were blocked,a tube half wrapped around my bowel(!) My left ovary was stuck to my wall. My Dr told me he was surprised I had lasted that long in so much pain. Ditto! It didn't help that I kept being stalled by ignorant, condescending, and/or inexperienced GPs for 2 years.

I am still slowly recovery from my lap even though I was hoping I would feel a better improvement by now in wk 5. I feel relieved that I have finally got an answer to my pain and suffering and I felt like a weight was lifted from me for about 2 weeks after my lap. But now I'm at week 5 and I am not feeling so good physically,mentally and emotionally. I've done so much research on endo to understand it better, but I feel my brain hasn't processed my diagnosis yet which is a bit troubling. It's like I am in shock or something.

I am still experiencing familiar endo pain as well as recovery pains. I was told I would experience nerve pain because my nerves have become sensitized to the pain for so long and that is what I am dealing with now which is making it difficult for me to walk again (I could barely walk before lap). I have reduced my pain meds and anti inflammatory the last 2 wks and only take it when in a lot of pain. I still rely on my heat pack practically every day to relieve aches and pains and discomfort from major bloating.

My first period after lap was not fun which I expected but since it has finished my body seems to be on the decline again. My left pelvic area reaching to left side of stomach swelled up a bit the day before my period and is still swollen now that my period is done. I've been having waves of sweats at night mostly but occasionally during day since my period, my boobs/nipples hurt and I'm still nauseas now and then (especially when travelling in a car). I was put on Visanne for 6mths to suppress endo, so I have no idea if I am still experiencing side effects from it or my body is adjusting to hormones after my tubes were unblocked? Or it's related to surgery?

I've been trying to build/test my strength the last 5 days because I've been so tired and weak and I'm also frustrated that I can't do simple things. I'm doing it slowly to be safe but today I felt I was able to make my bed without any help. But after I shook my donna into my donna cover a sharp pain jumped up my right side from my pelvis and left me in tears. This pain came in waves for the rest of the day. I felt so angry at myself because I was trying to prove to myself, as well as to my family, partner etc, that I was improving. Too soon!

What's making my mental and emotional health worse though is the lack of support and understand from loved ones. Yes they felt bad when I finally got a diagnosis and were really supportive up until about week 3 post op. Then the comments started about how i should be nearly better now and I should move on since I don't have endo anymore and I should be able to do this and that now. " I should be able to walk around the shops without a heat pack or a sitting break, I should be able to travel in a car without nausea and close to fainting. I should be applying for jobs again because i would be all recovered in a few weeks" Yes I thought I would be able to do that now too but I am still struggling. I keep having to remind them that I had extensive surgery and my body is generally slow to heal anyways, but it doesn't seem to be getting through to them. I know that once my pain and physical issues improve, my mental and emotional state will improve, but in the meantime I am lost and feel alone.

It's also the uncertainty of when that will happen and what my body has install for me in the next 6 to 12 months (will have to transition from Visanne to a contraceptive pill according to my gyno). I am 30 years old (31 this year) and I am living with my parents because of my crappy health and I don't have a job (also because of what I went through with endo). I am back studying to hopefully change to a job better suited for my health situation, therefore I rely on government allowance. I really want to get off that and go back to work so I can afford to buy a new car and move in with my boyfriend. It's all so frustrating and depressing right now.

I know there are people out there who are worse off, but after many years of chronic illness (plus additional years dealing with chronic migraines) I would just like to catch a break for once and not be in constant pain so I can get on with life.

Sorry for rant.

[megan31585]

Hi,

I just had some tears reading your post. I just feel for you so much and all i can say is you are a warrior and you have so much support here even if no one in your surrounding life is understanding. I will be sending you all the healing and healthy vibes straight out from my heart to you ❤️ It should get better very soon just keep doing research /self soothing/love and continue reaching out to those of us who understand anytime you need to!

[Lejay in reply to megan31585]

I didn't mean to sound too sad and pathetic, it's more frustration than anything. Thank you so much for the supportive and kind words and good vibes!❤

[Catness]

Sending hugs I get it, totally. I’m 13 weeks post op and in a worse state in many ways than before it though ironically not from the endo but from bladder issues and vulvodynia which is a result of the trauma of the op.

I know this is very easy for me to say, because I’m not in your shoes and further a long my Healing Path but I’m really trying to see this current time as an opportunity. I’m 29 and was about to start a PHD but being so unwell has made me really sit up and pay attention to my body and how I treat it and how my thoughts affect my pain and fear response. I’ve been listening to a fab podcast called the ‘women’s pelvic health podcast’, I’ve started acupuncture treatment, I’ve slowed down and sat with my pain to work out what’s going on, I’ve changed my diet, started CBT therapy and I’ve found more of myself to listen to and uncover. And this probably all sounds a bit hippy dippy and crazy but I have stage 4 endo, adenomyosis, Interstitial Cystitis. Fibromyalgia and ME so pain-wise I get it.

My biggest hurdle is my own mind. When the pain ramps up so does my anxiety and fear which corresponds to the ignition of the sympathetic nervous system and chronic stress, making nerves over fire and pain worse. Mindfulness and meditation is THE LAST thing I want to do (still struggle with it) but it’s so important to calm our bodies down. I’m currently reading a brilliant book called mind over medicine which talks a bit about this but any book which talks about the mind-body connection will be helpful. I watched a documentary on Netflix called ‘Heal’ which I also found inspiring.

As for your family placing expectations on your healing that must be so tough and it’s totally unfair but try not to let their thoughts cloud your healing journey because the stress you take on will only slow things down. If you’re on Instagram there are two accounts I really recommend for positive healing vibes: Lorraine Farhndrich and Jannyjudly. Both just talking about being kind to yourself which is so important.

I hope some of that ramble is helpful and please know that you’re not alone in this xxxxx

[Lejay in reply to Catness]

Oh no that's horrible for you! I'm so sorry to hear that! Bladder issues was one of my major endo symptoms before lap because of endo on the bladder. I understand how awful it is. I'm still waiting for the day where my bladder goes back to its old self after op but that may not happen so I am just retraining it and hoping for the best. It has improved a bit though thankfully.

Thank you so much for the supportive and kind words and great suggestions! ❤ I have been learning to pay attention to my body more and the signals it is telling me. I have learnt from my mistakes in trying to ignore and push past certain "inconvienences" of my body. Now that I am not in constant agony, I can slowly resume yoga again hopefully without any pain after! And practice meditation without painful distractions.

I am still basically learning to walk normally and for longer and not look like an 80 years woman when I do it haha. I do look forward to doing things again that I took for granted and to getting back to being myself again. I was such a patient person but after such a long wait in finding a diagnosis and then recovery, I am impatient now in getting back to enjoying life.

A positive thing though is that I have been able to focus more and have time to do my art during recovery. It's hard to get motivated when in pain but it's a good distraction for my mind when I can do my art.

I just have to try to not let other people get in my head with their comments and advice that is not always helpful. It is especially hard with my loved ones because I know they want me to be happy and healthy again and finally move on with my life (as do I!), but because they haven't actually experienced what I have experienced, there ignorance makes me upset and angry even though they mean well and try to be supportive.

[Catness in reply to Lejay]

Art sounds fantastic what kind of stuff do you do? Do you put it up anywhere (Instagram etc?)

Yes my bladder is calming down slowly and it’s a lot better than it was which I am very grateful for but welcome the day when it goes back to my ‘normal’ that’s for sure! Xxx

[Lejay in reply to Catness]

Mainly drawing but I'm trying to branch out into painting more and experiment and develop my style and get confident enough to create and share more art and eventually sell some. I'm inspired by nature a lot. When my symptoms got worse I started sketching flowers as an exercise in distraction and I have become almost obsessed with flowers, letting my hand draw while not thinking too much about it. I specialised more in graphic design and illustration in the past and getting things perfect and detailed, but now I have let loose a bit and it feels great to let my natural artistic instincts take over.

I have a little Instagram account instagram.com/__elliejenkins where I share some stuff in progress. I need to start posting more though.

That's good. Yes can't wait to say "welcome back" to my body xoxo

[Catness in reply to Lejay]

I’ve sent you a request on Instagram my name is Kitty Pert xx

[Lioness36]

I'm so sorry, you going through alot...I just got so emotional while reading your story... Indeed it has not been easy for you...I am on my second recovery week after they failed to do a Laparoscopy, they had to change into a full opened Laparotomy because I had so many complications..this was my 4th Operation, I have been opened 3 times in one place and those are very big Operations and the 4th one is on my lower right side . I had endometriosis on the outside lining of the womb , and both my tubes are blocked...it worries me so much because I don't even have a child yet but I already have so many operations and they have told me to consider IVF...I'm so young , traumatised and confused..I need help too

[Lejay in reply to Lioness36]

Sounds like you have been going through a rough time too! I'm so sorry to hear that. It's really not fair is it. Did the laparoscopy fail because the endo was in hard to reach areas or was it due to having previous ops? Did you end up getting the endo removed in the end?

I Just had my very first laposcropy which was extensive in itself but I am slightly afraid of what is to come in hopefully the very distant future because of course endo grows back. I haven't got kids either so that's something else that I have to all of a sudden think more seriously about. Before all this started and before diagnosis, I wasn't sure if I wanted kids or if I did,I would want to wait a bit longer. I have been with my boyfriend for a year and half now so it's a bit of an awkward topic to discuss when we are clearly not ready for that next stage in life yet.

I completely understand how this is all confusing and traumatizing. I have read that after many surgeries, some women have been able to have a kid with or without IVF. But I suppose it just depends on certain factors. I hope you have a good gynocologist to help you with your journey as well as supportive loved ones. Also I know there are plenty of women in this support forum who are here if you need support or answers ❤

[Lioness36]

The Lap scope was cancelled because the Endo was all over and because of my previous ops too, it was difficult to perform it as they could hurt my organs and I could bleed during the operation ..

Yes, they managed to remove it although they estimated roughly within 5yrs or less from now it could come back...I was also not ready for kids and now it's something to really think hard about due to this ..... I'll have to hear on the next appointment regarding my blocked fallopian tubes and see what other options are available.. I only knew that one tube was blocked but it wasn't something that really caught our attention until now when both are and we only catching a wake up now.... I really need help n Support ..it's been tragic... As young as I am n now I'm here

[Lejay in reply to Lioness36]

That's good they removed it. Did they estimate that time frame because of your past history? I never got an estimate but they say its different for each case. The not knowing if/when it will come back scares me but I'm trying to live in the present at the moment and get through one thing at a time. Has your doctor put you on any medication as an endo suppressant at all? I was put on Visanne (I'm in Australia) but I'm only supposed to be on it for 6 months and I don't know what happens after that...maybe I have to be put on the pill again. Not sure.

How old are you if you dont mind me asking? Hopefully you get it all sorted soon!❤ Do you have a good support network of family and friends? Mine piss me off sometimes but it's good to just have someone you trust to talk and cry to. I also hug my dog a lot. She can't talk back to me at least haha

[Lioness36]

Uhm yes, it's time frame due to my history and yes, my gynaecologist stated that with Endo, once it's removed u be at ease for time but roughly comes back within 5yrs regarding on previous history and it's stages.Well I also had to be on Visanne and with that pill here in SA it's like R500and before that I was on Depo Provera, I had to stop because it was making me sick and would cause occasional pv bleeding most of the time.Im only 22 yrs and I never had a strong support system from my biological family..So I was adopted by a certain family and I had to move in wth them because it has been so hard being on my own..

I know sometimes it's difficult for people to put themselves fully in your shoes, especially when they do not know how it feels to be in your position.. and having to face this challenge on your own really drains you out, I feel like that most of the time

[Lioness36]

What a touching story, I'm sorry that you going through such a tragic Experience...I'm apparently facing something similar...I am 22 of age I stay with my adoptive parents,my mom had to give me away due to that she's unemployed, uneducated and when I fall very sick she doesn't know how to help me...So the adoptive parents took me, atleast they have a car to rush me when I'm very sick or when I need to go for appointments...

Pls tell me about the government allowance u getting? Cause my Drs tried Sassa Grant for me to help assist wth hospital bills, petrol to appointments and to atleast pay for college fees so I can get a qualification to get a job that will accommodate my health

[Lejay in reply to Lioness36]

I'm sorry to hear that. I am in Australia so I was able to apply for a govt allowance for a certain amount of time.

[Adoradearheart]

It might be an idea to ask to be referred to physio, mine is trying to retrain how I do simple things such as walk and sit. We get so used to the pain we end up tensing in anticipation and therefore making it worse. I’m also 30 and hobble like an 80yo!