I have a big decision to make. After my private consultation today, I have been offered surgery. I do not have deep infiltrating endometriosis which is great to know and I am relieved. But I do have what appears to be mild Adenomyosis and quite likely superficial endometriosis.
I can go down the conventional route and try the progesterone only pill. Or I can opt for a hysterectomy (robotically) and any endometriosis found removed at the same time. And end monthly bleeding, pain and poor quality of life which I have suffered with on and off for 30 years. Quite frankly I am physically and mentally exhausted from sufferring these monthly events and now suffering extreme pain outside of my periods.
Please can those of you who have had a hysterectomy for similar reasons let me know your experiences and any pros and cons you can think of in respect of this decision.
I’d be really grateful to hear your thoughts and experiences.
Thank you.
Written by
MsWhistledown
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I had robotic laparoscopic hysterectomy with full pelvic clearance & excision of endometriosis as well as bowel shave. However I did have deep infiltrating endometriosis & even my kidney function had reduced to 60%. I know I didn't ever want to experience this sort of pain again & as my family is complete, I was advised the most likely way to prevent recurrence was to go ahead with the surgery. I was very much happy to go with this advice & am now 25 days post surgery. I am recovering really well. My surgeon thinks he got it all & am now on HRT as I am 47 years old. I am still learning what effects HRT is having on me & am still not sure I have found what suits me best yet as now feel like I am getting terrible headaches from time to time. Hopefully, we'll find the right thing for me & things will get even better for me soon. I'm certainly happy to have had the surgery.
Thank you for sharing. I’m glad to hear you have had a positive experience so far. I hope you find the right HRT balance soon and get rid of those headaches.
I’m 6 weeks post total hysterectomy, bowl shave removal of endo, unsticking of organs etc.
the first 2 weeks after robotic surgery were a walk in the park (although for the first two days gas pain hurt immensely). I could not believe how easy the recovery was compared to how my body responded to a diagnostic lap (3 months after I was still struggling to walk).
The main improvement was on my right when a large endo / cyst was. Prior to surgery, this part of me gave me hell all night and all day. It was such a relief to have it all out. I felt happier/ healthier than I had in years.
Then suddenly, after two weeks, I had multiple set backs which required a return to surgery and two other procedures/ stays in hospital. Very long story short, I needed to have my vaginal vault repaired as I was bleeding/ passing huge clots.
W 4 weeks post the emergency surgery and am still taking it easy. I have been signed off work for another 4 weeks. My mum has moved I to support me and my husband.
No sex for 4 months and no exercise for 3 months. Had to cancel a trip abroad.
The last week I have been struggling with my hormones and have been crying a lot. I’ve started on HRT (after I was advised not to take it for a month) so I am hoping that it will soon kick in as I’m normally an upbeat person.
I’m writing about the negatives before the positives as when I was signing the MDT consent forms and having the conversations with the various doctors, they didn’t appear real - surgery was simply a way for me to get my life back.
So what I am trying to explain is, even though this has been an overwhelmingly stressful period of my life, I still know it was the right one for me as I could not keep going without the surgery.
I wrote letters yesterday to the two hospitals involved in my treatment thanking them for giving me a future. Even through the hormone tears, I know deep down that surgery was the right decision for me. But do weigh up the consequences carefully- we are all unique and need to do what is right for us.
Thank you Bakeway. You’ve had a bumpy road after your surgery but it’s interesting to hear you that surgery was still the right decision for you. Your experience of complications is something I need to think about as a possible consequence if I go ahead with surgery.
I hope the HRT starts to help you feel brighter soon and you continue to recover well x
I have deep infiltrating endo, adenomyosis and large cysts on each ovary. I am currently waiting to be discussed by the multidisciplinary team to hear whether they will recommend surgery and what degree of surgery - so possibly hysterectomy, and then like you I will need to decide. While I am waiting they have recently put me on a double dose of Desogestrel, which has stopped my periods, and this has already made a massive difference to the pain and illness I suffered until now. I could quite happily go about my life like this for the moment, though of course I don’t know how long this is likely to be effective for.
I don’t know how long you would wait for a hysterectomy, but you could always try the progesterone treatment while waiting - might be worth discussing with your team? Everyone is different, and I’ve only been taking it for a short time but I cannot believe how much of an effect it has had already.
It’s such a difficult decision - surgery is drastic and has risks and you just don’t know how your body will respond to such a major change, but equally you get to a point where you’re desperate for something to make some kind of improvement to your quality of life.
Hope you get the info you need to make the right choice for you, and I’ll be reading replies as well to prepare to make a similar decision at some point…Xx
Thank you EssieW. Wishing you all the best on your journey to better health and quality of life. It’s a tough journey with hard decisions to make. But hopefully whatever path we choose it will provide the best possible outcome for us!
I have been offered the progesterone pill which I have thought very carefully about. I have chosen not to try it. Mainly due to having bad reactions to contraceptive pills in the past and not wanting to trigger any other symptoms on top of what I am experiencing. I am so glad it is working for you and helping with your symptoms xx
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