I am currently just over two weeks post surgery and I am recovering very fast. I am going back to work earlier than planned, as I feel so well. I feel like it will be good for me to get back to a normal life and be at work. Sitting at home and thinking about everything all day is no fun. The second surgery did not go to plan, as you are already aware, but I do have news regarding the next surgery and the plan moving forward. Lots of you have been asking me for an update, following my appointment with the new consultant, so I am sharing this news with you.
Recovering from surgery again!
I guess I knew what to expect this time, as I have had the surgery once before. I have found that I didn’t have much pain in my abdomen this time….I assume this is because the surgeons couldn’t really do anything to me! But my shoulder pain from the gas has been pretty bad. I spent the first couple of days chilling on the sofa and then got back to normal pretty quickly. The gas pain has been much worse than the first time, I have no idea why….maybe because I have been very mobile a lot faster than last time. At one point, the day after surgery, I went off to the toilet and when I returned to the lounge, I got stuck and couldn’t move due to the excrutiating pain in my right shoulder and under my diaphragm. My dad (Big Daddy) had come over to visit and I think I really scared him, as I literally couldn’t move due to the pain. I got myself in such a state and the more worked up I got, the worse the pain was. I ended up screaming very loudly for what felt like minutes and neither Chris nor Big Daddy knew what to do with me, both looking quite terrified at the noises I was making. I had to try and calm myself down and once I did, the pain eased, but did not disappear. It was not a pleasant experience and happened 3 times in one day, usually after I had been mobilising. My poor neighbours must have wondered what on earth was going on in our flat!!! It took around a week for the shoulder pain to completely stop. I was drinking peppermint tea, which is advised to help with the gas. I also made Chris massage my back and shoulders with peppermint oil every evening before bed and I am sure this helped too.
The pictures below show my swollen tummy the day after surgery and then a few days later when the swelling had gone down. Notice that I wore the same pair of Chris’s PJs all week…..I promise I did wash them regularly!!! You have to wear loose, comfortable clothing after surgery, so the wounds are not irritated. Tight, high waist jeans are a definite no as they rub on the belly button wound…..they also didn’t fit me as I was super swollen and looked pregnant! Also, please ignore the rediculous tan lines 🙂
Sleeping has been difficult for me during the last 4 months, due to the hot flushes at night. Following surgery I could only sleep on my back, as sleeping on my side was too uncomfortable with the shoulder pain, and sleeping on my tummy was definitely not possible. I put a pillow under my knees which I found helpful. I also used a hot water bottle as a warm compress for the discomfort in my abdomen. This usually only lasted a short while before a hot flush came along and resulted in me throwing the hot water bottle out of the bed and scrambling to the window for cold air!!!
Luckily, my surgeon went through the same holes as my first surgery, so I don’t have any new scars. I had stitches this time, as I had an allergy to the glue after the first surgery. The holes have healed really well, but the stitches have not dissolved yet. The bruising takes a few days to come out and has not completely gone yet either. All in all, apart from the ‘gas pains’ I have been very well following surgery.
The snow started to fall on the day of my surgery and I was desperate to get out in the fresh air and explore the beautiful white scenery. By the end of the week we went out to watch all the people having fun sledging…..I was gutted I couldn’t join in! Although most of the snow had gone by then, as it was melting quickly in the sunshine. Getting outside, having the sun on my face (albeit very cold) and breathing fresh air, is the best way to make yourself feel instantly better. I do not have any pictures of the snow when it was at its deepest as I didn’t leave the flat, I realise these ones look a bit pathetic. But, while I watched out of the window, it did get a lot thicker than this.
Plans for surgery number three!!!
We had an appointment with my new consultant, who specialises in endometriosis and also happens to work at the hospital I work at, so I know him. He is very experienced and knows his shit when it comes to severe endometriosis. I feel very lucky to have been under the care of two amazing consultants so far, both of which I trust implicity. I had to have a vaginal and rectal examination, which was extremely uncomfortable, but manageable…..I kept reminding myself to relax…..which is what I tell all my patients during an examination, but now I understand how difficult is is to relax when someone is causing you pain! I would not want to repeat that experience again in a rush!
My consultant would have liked me to have frozen some eggs prior to surgery, due to the high risk of damage to my ovaries and decreasing my egg reserve. However this is not possible, due to my ovaries being stuck somewhere they shouldn’t be, making it impossible to collect the eggs. Disaster!!!
The planned surgery will be much more invasive and risky than my previous surgeries. It also comes with a longer recovery period due to the complexities of the operation. My consultant has a lot of work to do to make my pelvis ‘normal’ again. It is likely to be a 3 hour operation. Things on the to do list during surgery include:
- Remove both endometriomas and unstick ovaries, moving them back into their normal position
- Likely remove my appendix, if he is not able to unstick it easily
- Assess my fallopian tubes for hydrosalpinx and if abnormal remove (hopefully left side only)
- Remove as much endometriosis/adhesions as possible
- Unstick my bladder from my uterus
- Unstick my bowel from my uterus and assess if endometriosis has imbedded into the bowel
- Make the organs in my pelvis as normal as possible
There is a risk of causing damage to my ovaries, bladder and bowel during the surgery. I may need to have further surgery to remove part of my bowel if the endometriosis is imbedded into it. But he will not know this until he gets inside me! This means I would need a stoma while it heals. We are of course hoping this will not be the case, but he has warned me that I do have quite severe endometriosis. I will also have to endure the dreaded picolax experience again prior to surgery number three……oh what a joy! At least I know what to expect this time!!!
So, I am on the waiting list to have surgery on the NHS. This is likely to be between 8-12 weeks. So now all I can do is wait until I get given the date. My consultant doesn’t want me to have any further Zoladex…..this is the best news I have heard in months! The Zoladex takes between 4-16 weeks to get out of my system. We were thinking about paying privately to have the surgery more quickly, but until the Zoladex is gone, it makes no sense to have the surgery earlier, as I still wouldn’t be able to try and conceive until my periods return. I am hoping that by the time I have surgery, my cycles will have returned to normal and I will be Zoladex free and back to my normal self…. Hopefully I will be able to smile again and stop being so irrational!
Get me out of the shitty menopause and back to being a normal 30 year old…..well as normal as you can be when you have endometriosis!
My consultant has suggested that if the surgery is a success then I may be able to conceive naturally on my own, but the likelihood of requiring IVF is still high. I will have to make a decision about what happens after surgery, once we know if it was successful or not. Do I give myself a chance to conceive on my own or go straight for IVF? I am thinking I will probably ask to be referred straight away, as I know things take time in the NHS. I also do not know if I will be eligible to have IVF on the NHS yet either. If I am eligible then I will likely have plenty of time following the surgery, while waiting for referrals and appointments to try and conceive naturally. I don’t see the point in waiting too long before the referral is done. I really do not want the endometriosis to return and have to go through surgery again any time soon. The endometriosis will return over time, as surgery is a short term fix not a treatment for endometriosis. As I have said before there is no treatment for endometriosis. I am likely to have to go through the operation again in the future once the symptoms return.
Everything is subject to the next surgery. If it is not successful, then IVF is not an option for us anyway and natural conception is not likely, given we have had 3 years of trying so far without any success! So we are keeping everything crossed that the new consultant can work his magic and make me as normal as possible. We are trying not to think about what happens if it is unsuccessful…..we will cross that bridge if and when we get to it. Some people have suggested that I should start thinking about other options, but I am not ready to do that yet. Until I am told 100% no, then I am clinging onto my dream that it will be possible for me to carry my own child either naturally or by IVF. I guess some might think this is naive, but its my way of getting though all this. I hope it will be fine in the end and this will hopefully just be another chapter of our story.
Thank you to everyone for the ongoing support. I love hearing other peoples stories and positive outcomes, it helps me to keep going! It would be very easy to give up and not put myself through anymore treatment or pain, but I know I will be thankful one day when I get to hold our baby in my arms.
Also, march is endometriosis awareness month so lets spread the word and get talking about endometriosis. So many of us are suffering in silence. Lots of women have contacted me sharing their own similar stories, it is always nice to know we are not alone in this. Please leave a comment and share your story with others who might be following my blog. We need to support each other.
#I am 1 in 10
Sincerely, Shelly x