First of all, I recognise that hysterectomy for endometriosis is not a cure. If the endometriosis is elsewhere other than the uterus, excision is currently the best option rather than hysterectomy. If hysterectomy is undertaken it is important that all endometriosis is removed/excised from all areas to avoid it flaring up (even after hysterectomy).
However, I woke today to a steam of confusion over Lena Dunham’s decision to have a hysterectomy. There is huge fear and concern over the spread of the idea that hysterectomy will cure endometriosis. Again, no it won’t necessarily. Let’s just remember for one moment that we don’t actually know Lena Dunham personally, and we don’t know exactly what her individual case involved. Unfortunately the media and popular magazines have quickly published about her and her hysterectomy and haven’t really given all of the facts.
I had a hysterectomy two weeks ago and in all honesty for me it was the best option. Trust me, I considered it for over a year. I just want to bring some recognition to why it might well be an option. I have had symptoms since I was 12 years old, and I was finally diagnosed at 26 via laparoscopy. At that moment in time the gynaecologist felt my case of endometriosis was too complicated (it had spread all over the place and to many organs) and wouldn’t operate on me. So, I found a wonderful consultant who is a specialist in endometriosis, and for the last ten years I have had regular excisions to keep the disease under some sort of control. I have had two children (one naturally and one through IVF as both of the fallopian tubes became blocked). I feel extremely lucky, and I have stayed positive and made choices along the way with the support of my husband. I have avoided taking on other people’s opinions, apart from my husband’s.
It got to a point where I can honestly say for me a hysterectomy was best. At first I was adamant that I would not do it, but after investigations and scans it became clear that actually this might be the next step for me. I had adenomyosis (cells similar to endometriosis in the muscular layer of the uterus), endometriosis on other organs (tissue similar to the lining of the uterus, endometrium, and is found outside of the uterus), and scar tissue everywhere. Every six months to a year after excision I would again have tangled organs, and scar tissue due to all of my operations. The uterus was enlarged and caused bloating and pressure that was pretty nasty. Removal of the uterus was the best option.
I had a hysterectomy, saving one ovary, and excision of endometriosis and scar tissue to free up my organs (bowel and bladder). My case is on the more extreme side in terms of damage and believe me it wasn’t an easy decision. For me however, it was the best option, and during the C-section of my last child the surgeon (who had never met me before) told me it was like a car crash in there and I needed to urgently do something. Luckily I was under local anaesthetic and couldn’t move, as I may have swung for him : ).
So, while I agree it is important that we give women the correct facts about hysterectomy and enable all of the other options to be spoken about, sometimes it might be the best option. I also recognise that I was blessed to have had my two children by the time that things became critical.
My advice?
I would suggest seeing an endometriosis specialist consultant, someone who really knows about this disease. Someone who engages with the research, and has a catalogue of women who are positive about the treatment that they received.
Also, don’t go into denial, be on the ball in regards to your symptoms and any changes that you observe. Early intervention when things suddenly get worse can make a big difference.
Use meditation and other psychological management techniques to encourage a clearer view of your situation, be in tune with your own body and soul. Try to connect with yourself at a deeper level to gain confidence in the decisions that you make.
Try not to see it as a battle, which is kind of exhausting. I have viewed it as a challenge.
Be careful what you read, only take information from sources that you trust. Endometrisosis is still not completely understood and lines of treatment do need more investigation.
Lastly, be kind to yourself and please know that you are not alone.
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