I've never written a post on here before, I've always been a 'reader'.
I have suffered with endometriosis for about 15 years. I am waiting for a date for my hysterectomy, this is something I did not envisage at 34yrs old. They're making the cut horizontally and taking everything and also having a bowel surgeon present as the disease is around that area too.
They said that there is a significant chance of being left with a colostomy bag.
I am absolutely terrified of this operation and the recovery process afterwards and really need others to talk to who understand.
I'm trying to remain positive but am increasingly becoming withdrawn from my family as I feel they 'don't quite understand'.
Thank you for reading.
Written by
Shanee
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I have just had total hysterectomy with keyhole surgery 2 weeks ago today. I am not as young as you, as I have just turned 40, but still all very daunting. Endo had stuck my uterus to bowel & bladder and my left ovary was stuck to bladder and also pelvic floor. I am very lucky that I had a leading surgeon in keyhole hysterectomies, so my recovery is a little shorter than open surgery. I have had an infection and just finishing a double course of antibiotics.
Good luck with everything & I hope that the surgery is a success.
Hi I'm so sorry to hear of what you are going through.
I appreciate I obviously don't know the full story and there may be a perfectly good reason why your specialist is recommending a hysterectomy. However, a lot of research shows that a hysterectomy is not considered to be a cure for endometriosis and is rarely necessary.
I wonder whether you have been seen by a general gynaecologist or an endo specialist (ie one the accredited endo centres on the British Society for Gynaecological Endoscopy)? Also have you thought maybe about getting a second opinion before undergoing this major surgery?
The reason I ask is that I have endo. After suffering from endo for almost 20 years, having 5 laparoscopic operations and a course of zoladex I gave up on traditional medicine when their final options were tramadol for pain relief or a hysterectomy. I went away, started the endo diet and exercised daily to reduce my symptoms. This helped me manage my endo for a good few years.
Unfortunately my symptoms have gotten worse over the years and are impacting on my day-to-day life so I started to do some research and a particular consultants' name in the UK came up quite a bit. Unfortunately he now only sees private patients. Thankfully I have private health insurance that does cover some of his fees - but sadly not all. I have seen him and had a diagnostic laparoscopy and also been diagnosed with Adenomyosis now. This consultant, based at the Elland Hospital, (I don't think I'm allowed to mention his name but if you PM I would be more than happy to pass on his details) is recommending total peritoneal excision surgery and also a hysterectomy but the hysterectomy is purely for the Adenomyosis. Whilst I also have cysts on both my ovaries, he is adamant he will preserve my ovaries due to the health risks associated with early menopause and HRT - he believes vehemently that the ovaries can nearly always be preserved. Anyway I'm booked in for surgery in March and the surgery will take a minimum of 6 hours so naturally I am nervous. I'm 39 and although admittedly no spring chicken anymore I still feel way to young for a hysterectomy so I can imagine how you feel :(.
However I have done my research, messaged people on this forum who have undergone surgery with my consultant and even managed to speak to someone on the telephone who had surgery by him 2 years ago for her endo. In her words she was an "absolute mess inside" and other surgeons were recommending hysterectomy. This consultant undertook a 9.5 hour operation and she avoided the need for a hysterectomy. I have read other similar stories about this consultant on this forum and some endo forums. It appears there are few surgeons with either the skill or inclination to perform such complex endo surgery which I think is why all too often surgeons recommend hysterectomy and bowel resections as it is the quickest and easiest solution.
If you haven't done so already search this forum for 'total peritoneal excision' and you'll be able to read some of the stories I have. I obviously haven't had the surgery yet so cannot 'vouch' (for want of a better word) for the consultant personally. However, after hearing others stories and speaking to someone directly I feel as confident as I ever will be that he is my best shot at finally having a better quality of life.
It may be worth considering at least a consultation appointment with him and a diagnostic laparoscopy (which he insists on regardless of previous diagnosis so he can see for himself the extent of the disease) to see what he thinks he could do? If financially this is not an option I have also heard that there is a NHS consultant at St Mary's Hospital in Manchester (he's on the list of accredited endo centres) that also has a good reputation.
Hi, I just wanted to reply and thank you for your wonderful advice. I stopped the process for my hysterectomy and changed my diet to the endo diet and juices. I am on the Cerazzette tablets. I seem to be okay unless I stray off and gorge on Choc or caffeine.
I know I might just be putting off the inevitable but your reply gave me a lot of food for thought and made the decision to try every avenue before the drastic surgery.
Any way, I know I hadn't replied to you and wanted to thank you x
Oh dear no wonder you are scared, who wouldn't be faced with comments like that from the doctor. I can recommend arrows park Endo centre please think about visiting one of these centres, fingers crossed you have somewhere close by. Good luck xx
I would.be getting a second opinion by an endo specialist! Hysterectomy does not cure endo. I have rectroviginal endo the most severe form it has spread everywhere my consultant actually said it has obliterated my entire pelvis. I'm waiting for major surgery with endo specialist bowel surgeon and urologist. They haven't once mentioned hysterectomy to me. And only in very rare cases do you have a temporary colostomy. Please please get a second opinion by endo specialist surgeon. It will help you to feel more in control if you do. Big hugs xx
Hi Shanee, I agree with others; - a hysterectomy is a HUGE operation and would suggest delaying (don't worry about them being upset with you) until you have got a second opinion of someone who you feel hears you or at least researched more about the side effects yourself.
There is a great website in America that helped me and has loads of information when I was in the same dilemma as you; its called Hysterectomy Education Resources and Services. I read the website, their book and spoke to one of the women and felt so glad I did not go through with it. My mother had a hysterectomy after years of chronic IV endometriosis but it only made the endometriosis worse, she had terrible adhesions after the operation, had countless bowel & bladder problems (the uterus keeps the bladder separate from the bowel), pain during intercourse, etc. Doctors/gynaecologists promote hysterectomies as the 'easiest' way to deal with the endometriosis problem but its like hitting an egg with a sledge hammer and you only swap one set of problems for another.
I empathise whole heartedly with the debilitating excruciating pain that endometriosis causes (I used to have chronic endometriosis and adenomyosis) and understand the feeling to just do anything to get out of pain - but once your uterus has been removed there is a high probability of other equally debilitating problems developing.
I had a total hysterectomy in October last year. After having a barium enema and MRI, the consultant was worried about endo on my bowel and the operation was performed with the surgeon and a bowel surgeon on standby. I was extremely worried about what I would wake up to. After the surgery I was told that I had had bowel surgery, but they were able to stitch it back together - so no need for the bag.
The first two weeks after the surgery were pretty bad - I couldn't cough/sneeze without first preparing myself and holding a pillow over my stomach, to try and minimise the pain. After that the healing progress got better and 4 months later (nearly 5) I feel absolutely brilliant. I know the hysterectomy is not a cure and I know that if any is left then the HRT will feed it BUT I have been pain free for five months, I have lost 1 1/2 stone in 5 months, I can live my life how I want to live it, rather than thinking, I can't do that because of the pain or making excuses to people as to why I can't go to places etc.
I'm 36, no children and Ive felt like I have been 'existing' rather than living. My OH used to dread my periods (probably more than me) because he couldn't do anything to help me (except make hot water bottles. I made my decision because I was diagnosed by lap in jan 2013, I had a 17cm cyst on my right ovary, so this was drained and scrapped in a follow up lap in April 2013. However, my left ovary was so badly covered that the surgeon opened me up and removed it. I then went on GNRH injection for 6 months (best 6 months of my life) in November 13 I had a ultrasound and it picked up a 3cm on my remaining right ovary. In jan 14 I collapsed and was rushed into hospital (due to endo pain) I was referred back to the consultant and I said to her that it felt that I was back at the beginning and everything that had happened the previous year was for nothing. She then referred me to the endo specialist. Who after the testing etc said about the hysterectomy. This was April 14 - I agreed and try operation was in October. When they operated the right ovary had a cyst of 18cm. So between the scan in November 13 and the operation in October 14 the cyst had grown 15cm AND. I had been on the GnRH hormones for 6months. Hearing this I was so glad so have had the hysterectomy.
That's my story (rather long I know) I know everyone is different - and there are lots of differing views on here. I did a lot of research before my op and looking back I'm glad I did. Good luck with whatever you decide.
Hello everyone, I haven't replied to you all but I have read and reread all of your advice and wanted to thank you all so much for taking the time out to reply to my post.
My head is all over the place but I'm taking everyone's advice and seeking a second opinion and making sure I know all of my options available to me.
Thank you again to everyone for your support, it really is much appreciated xxx
Hi Shanee. I know this is an old post but I'm at a loss with pain myself and wondering how you are and what happened?
I am 35 and have suffered for going on 13years. I had a lap 8months ago where Stage IV Endo was diagnosed. I've also had a camera in my bowel and MRI where Adenomyosis was diagnosed.
I was supposed to have a total hysterectomy last month but due to "complexities of scheduling" the Endo specialist and the bowel surgeon it's now looking like autumn (10months after my lap).
I'm on Prostap and HRT at the minute but I feel like everything is getting worse.
I'm wondering whether you had your hysterectomy or whether you found akternatives.
I'm sorry to say that I'm still suffering. I didn't have the hysterectomy as I felt as though my gynae wasn't listening to me or my concerns.
I finally got a referral at the beginning of the year to an endometriosis accredited centre in Oxford. My appointment isn't until the end of September though so fingers crossed I'll get more answers and a solution for a way forward.
I'm sorry to hear that you're suffering too. This truly is a cruel disease. I find that talking to people through twitter can help you to feel not so alone with it all.
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