Girl Talk: Living With PCOS #05
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If you have followed my Living with PCOS series then you will know that I have been awaiting my results of my operation. Well this happened, on the 1st October. And if I am honest I don’t really know how to feel about the results. This post is probably going to sound like a huge waffle as I am just going to write my thoughts, but let’s go with it and see what happens.
So yesterday was a complete emotional roller-coaster, not only was I going to try on my wedding dress for the penultimate time before it’s finished being made but I also finally picked up my results following my laparoscopy – that was in June might I add, really NHS? – anyway, so I went to meet with the gynecology surgeon that completed my operation to see whats going on with my lady organs and hopefully I can go back to not having the worst pains ever when its that time of the month and having a normal sex life with my soon to be (very soon) husband.
I can’t believe I am saying this about someone who has seen more of me than, well, I ever have but she really was lovely and throughout the past 5 plus years of me visiting several doctors and gynecologists, she was the most informative and honest doctor ever. I arrived, very anxious, with my mum sat with me in the waiting room showing me stupid photos on her phone to distract me when I heard my name being called. I went in to meet my surgeon, a face that I briefly remember from the blur of coming round after my surgery, and I sat. Before jumping head first into the nitty gritty, she pleasantly asked how my recovery was, how I’ve been feeling, and started (from scratch) to discuss all the problems I have been having.
The next thing I knew, whilst the surgeon was writing notes on my life history, photos of my insides appeared in HD and mega zoom mode on the page next to her notes. How fascinating. It’s so weird seeing your insides in that amount of detail on page, but I was so intrigued. After going through my life history, the big important question was asked “Do you want children, or planning in the future?” Now, like most girls, I've been through the broody stage and I really wanted a baby. It actually got uncontrollable how much I wanted and thought about having children, but me and my fiancé decided it wasn’t the right time.
My answer was, I don’t know. I don’t want and I am not planning on having children now, and even though I am not sure whether I actually want children in future, I still want it to be my decision and not something out of my control. Having already known the complications of having PCOS (it’s difficult or occasionally impossible to have children as PCOS means your eggs don’t fertalise or are not carried down the fallopian tubes properly) and having endometriosis on top, I wasn’t surprised when they told me that I wouldn’t be able to conceive naturally. Or so I thought. Truth is, no matter how much I had prepared myself for knowing that there might be a chance I can’t have children, you can never prepare for how you may feel when they say that you can’t conceive naturally. Although my surgeon/doctor was extremely positive and advised me that as and when I am ready to have children then I could meet with her who can then discuss options and arrange to possibly have IVF. But being honest, I don’t know if I want to go down the IVF route, not only is it expensive (if you don’t qualify on the NHS) but also I need to think that do we really want to go through months or years of hormone treatment, all the pain and effort of IVF to then be told that it’s unsuccessful? It is what it is, and maybe I am just not meant to be a mother. Instead, I’ll probably end up a crazy lady with a million and one pugs instead.
There were actually two elements to the conversation with the surgeon, PCOS and having children, and having Endometriosis. My operation of a laparoscopy was to confirm and diagnose a form of Endometriosis, it was confirmed that I have endometriosis of my pelvis, wall of my womb, uterus and lower ovaries. The surgeon told me that I have a more severe form known as Deep Infiltrating Endometriosis (D.I.E – not a very nice medical code name). To give you a quick lesson on D.I.E, this is basically a deep form of endometriosis that is deeper than 5mm of the tissue lining on your pelvis. It can also be found near the rectum, bowel, appendix, bladder, ovaries, pelvic wall and can also grow into the nerves.
My doctor shown me photos of the Endometriosis damage on my lady organs, the only way that I can describe this is like little beauty spots on the inside of your body on your organs but they will appear a little more of a blacky-purple colour. Mine are in small clusters of 3-4 spots and are scattered all over my pelvis, wall of my womb, uterus and lower ovaries. It's so weird that this little spots cause so much pain and so many problems. Annoying little things.
There are many different options to treating Endometriosis so the treatment for mine may not necessarily be the same for you. But at first they discussed Hormone Treatment which can last anything from 2-5 years and will attempt to repair the damage caused by Endometriosis tissue but there is no guarantee that this will solve the problem. Hormone Treatment is used to limit or stop the production of oestrogen in your body, by limiting the amount of oestrogen in the body, the Endometriosis tissue can be reduced. (As oestrogen encourages Endometriosis tissue to grow) However, I have a blood condition which is caused by lack of certain proteins in my blood, and by using this form of treatment can increase my risk of having thrombosis (a blood clot) and can actually cause more damage in the long run. Instead my surgeon recommended the best form of treatment is to have a further operation to attempt to cut away all the Endometriosis tissue. This should resolve the issue, although the Endometriosis will still likely come back as there is no cure to prevent it completely. Worst case scenario is that if the operation is unsuccessful or complications arise during surgery, at this point you will need to sign a disclaimer that you are aware that a hysterectomy maybe an option. But don't worry, this is usually the last resort after exploring all other options or if there were complications during surgery which meant this was the only option to save your life (of course, very unlikely).
There are many different options to treating Endometriosis so the treatment for mine may not necessarily be the same for you. But at first they discussed Hormone Treatment which can last anything from 2-5 years and will attempt to repair the damage caused by Endometriosis tissue but there is no guarantee that this will solve the problem. Hormone Treatment is used to limit or stop the production of oestrogen in your body, by limiting the amount of oestrogen in the body, the Endometriosis tissue can be reduced. (As oestrogen encourages Endometriosis tissue to grow) However, I have a blood condition which is caused by lack of certain proteins in my blood, and by using this form of treatment can increase my risk of having thrombosis (a blood clot) and can actually cause more damage in the long run. Instead my surgeon recommended the best form of treatment is to have a further operation to attempt to cut away all the Endometriosis tissue. This should resolve the issue, although the Endometriosis will still likely come back as there is no cure to prevent it completely. Worst case scenario is that if the operation is unsuccessful or complications arise during surgery, at this point you will need to sign a disclaimer that you are aware that a hysterectomy maybe an option. But don't worry, this is usually the last resort after exploring all other options or if there were complications during surgery which meant this was the only option to save your life (of course, very unlikely).
So for now, it’s back to playing the waiting game whilst I wait about 8 weeks for a hospital letter to give me a date for my operation (probably in about 8 weeks after the letter) to see whether they can get rid of the Endometriosis. I don't really know what else to say really as I still don't really know what's going on or what will happen. What will be, will be. Life throws many challenges our way and we have to just deal with them. And I suppose, this is my challenge and I just need to deal with it.
If you suffer or know someone who is suffering from PCOS, and are affected by anything in this or the other PCOS posts, or if you are just wanting to speak to someone in confidence, then please feel free to email me (top right of the page) as I am always happy to try and help.
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