Update - 6 weeks post op after Total Abdominal Hysterectomy and Bilateral Salpingoopherectomy

[pinkpig2009]

Following on from my earlier blogs. I am now 6 weeks post op and I feel absolutely brilliant. I have been discharged from the hospital and have also been advised that I should be able to return to work 1 month earlier than expected. I'm a PA.

My wound has heald brilliantly, no infections at all and best of all I am no longer on any painkillers - they all stopped a week after my op. I just take paracetamol for the occasional headache now and nothing more. I have so much more energy that I have to keep putting the brakes on to remind myself what I have been through and had done. I have been through so much I don't want to do anything to put myself back.

I was put on HRT 4 weeks post op - Evorel Conti patches and I have not experienced any problems.

I have been out on my mountain bike today for the first time in ages and cycled 2 miles no problems. The only form of exercise I can't do yet is lifting weights or anything that uses the stomach muscles until I am 3 months post op.

The other thing I have noticed is that my sex life has returned better than it was before. I have always had a healthy appetite and am fortunate to have a partner that feels the same but has also respected the cruel disease that is endometriosis so never put any pressure on me. Now it is me putting the pressure on him, I pounce him at every opportunity I have - the poor thing.

I was 40 last weekend and everyone says life begins at 40. For me it definitely has.

Good luck to all the lovely people out there that are still fighting to get help, relief and support for this terrible and cruel disease.

Sue

xx

[Cazzer8282]

Hi Sue.what a lovely happy post.Absolutely delighted for you.You have certainly put a smile on my face.Enjoy! You deserve it.

[jalo69]

Woop woop go girl! Im so pleased to hear of your new beginnings. Hopefully i will be singing from the rooftops or swinging from the chandelier postop! im due a hysterectomy 15th May. My concern is the hrt so reading your news has left be feeling less anxious. We have holidays booked august villa with pool so have been dreading the onset of hot flushes starting then! I can see me jumping in the pool evey night,could be a blessing in disguise having it! Good luck with your new you! J xx

[pinkpig2009 in reply to jalo69]

I haven't felt anxious about any of it as I knew this is what I wanted. My consultant was really pleased with my recovery and she said it was due to my positive attitude. I didn't want to lie in bed feeling sorry for myself the day after my op I wanted to be up and about getting on with my life which is exactly what I did.

Good luck for your op and have a lovely holiday. I am going touring on my motorbike in the summer and I cant wait.

x

[Amb43]

Fantastic news, well done you !! Wishing you many happy bike rides throughout the summer! xxx

[squidgy]

Oh wow that is great news! So happy for you that everything has worked out well and you are feeling better than you ever have! It is nice to hear a happy blog on here. Congratulations on turning 40 too. Have a fab motorbike touring in the summer!

Best wishes x

[jalo69]

Positive thoughts it is. I do try to be upbeat about it all and look forward to a change if i do over excite myself with stories i real myself back in and reflect on the pros of it all. Why worry about things that may not happen if it does then we deal with it then right? Thanks for posting its certainly one blog to help me on my way. Happy holidays yay xx J

[blank]

Happy for you, enjoy your life

[Juleyanne]

Thank you for giving those of us with possible or definite hysterectomies on the horizon hope!

I have been putting off seeing the gyne and even Gp for nearly 2 years now despite being in pain most of the time to some degree because of intense fear of complications and worry of worsening scar tissue problems. I love walking my friends dogs and even worry that I might not be able to take them out for 6 months if I had a hysterectomy! I worry about my indoor cat going into catteries (which she hates) for a long time. You hear stories of people needing blood transfusions and getting infections and being in intense pain. So for all those reasons I have been hiding from what might be an inevitable conclusion. Reading your post is uplifting because you kindly took the time to let others know it can be successful and the recovery time isn't as long as you expected, thank you. The Hysterectomy Association has a blog section and I am sure lots of women would love to hear your positive outcome. It would be interesting to get an idea what you were going through which led to the radical hysterectomy you had and what other options you tried which didn't work before? It was suggested two years ago that a Salpingo Bilateral Oopherectomy might be considered for ongoing endo and largely adhesion problems. I am now months into menopause and recent ultrasound said uterus is ok but both tubes removed in the past which later stuck to bowel and other ovary and spread into my stomach. Gyne also said my right deep hip pain and right pelvic pinching and bowel problems and low back pain and stiffness could be muscular skeletal despite my history but in the next breath stated if Zoladex didn't work, which it didn't it was likely adhesions my problem plus I have Diverculitis Disease to confuse things more. I just wondered if you had a similar history which led you to this thankfully successful hysterectomy? I always get pain in my right pelvis at night and constant bladder pain and pressure has me back and forth to the loo at night. I often wonder what it is like to have your energy back and be without pain. Thank you for giving me and others hope.

[pinkpig2009 in reply to Juleyanne]

Hi there

I had suffered with Endo for 17 1/2 years and I had gone through various laporoscopies, laser surgery, tried different forms of the pill, the coil, prostrap injections, accupuncture the lot.

In the 18 months or so leading upto my hysterectomy I just couldn't find or do anything that would bring the Endo under control. The pain travelled down my legs round into my back, hips and in my shoulders. I was at my wits end and was really considering taking an overdose as it was all just getting to much for me. There were days when I couldn't get out of bed and just going to the toilet had me doubled up. I used to have problems with my bowel and bladder. If I got an urge to go then that was it, I had to go.

I saw my Gynae in September and once I told her I was feeling she total supported my decision to have the hysterectomy, on one condition. I had to loose weight and exercise more. Over the 17 1/2 years I had put on 7 stone just because I didn't have the energy to do anything. I just thought this was going to be another excuse and trying to put me off. I wanted the operation so much that I was determined to do what I could to have the operation.

Despite the ongoing pain and feelin as rough as a bears behind I went to the gym 4 nights a week and followed the endo diet. Yes there were a few occasions when I thought I can't do this because the pain was so bad but I made myself go, if I didn't use the equipment at the gym I went swimming. I really changed my mind set and kept myself going with a positive attitude.

When I went back to see my Gynae in December she couldn't believe the difference in me, I had lost 2 stone and she gave me the date for my operation on the condition that I kept looking after myself. Over christmas I kept going to the gym and right upto going in hospital in January.

Even though I haven't been very active for the last few weeks I have managed to keep the weight off and even loose a few more pounds. So I am now determined to keep loosing the weight and get back down to my ideal weight.

I am very lucky to have a very supportive and understanding parterner. We have only been together 3 years and he has only ever known me to be without pain for 6 months which was when I had laser surgery 3 years ago. I have never had children and always wanted them but what life would it have been for me and them. It was a very painful and hard decision for me to make but I am so glad that I did. I am lucky to have a fabulous nephew and 2 great step children so they do make up for me not having children of my own.

xx

[livinlife44 in reply to Juleyanne]

Hi there, I am 10 days post op open hysterectomy with cervex and ovaries as well...I want to tell you that I was having my surgery initially because of fibroid and ovary pain from complex cysts. I also was getting two periods a month and was always uncomfortable. ...my life for 9 yrs. Was not what it used to be. I too had many issues with pain on the right causing siatica...etc....when they went in to do my surgery it turned out that everywhere I had adhesions. .I lost a lot of blood and need a double transfusion. Why I'm telling you this is that I went through an extremely intense surgery and I felt amazing 2 days post op!. I am already walking and can't wait to get back to biking and living my new and improved life! I did go into menopause immediately but I reluctantly went on estrogen alone and it has helped a ton!

Stay positive. Things happen surgery isn't always as planned but you need to get your adhesions out and start feeling well again! Good luck and be patient...my adhesions were the reasons for all my problems!

[suziethom]

Sue, this sounds amazing I am so happy for you. I am 34 wirh no children and really struggling with constant pain and fatigue. After reading your post I am so tempted to ask for that route. I have never really had a massive need to have a child and feel that with all the pain as nd fatigue I would not be able to cope. Do you think I have any chance of getting this done?

They always seem hesitant when you are childless. Enjoy your holiday, the open road and freedom.

Suzie

[pinkpig2009]

Hi Suzie

I have just added more to my blog. You have to do what is right for you. I thought long and hard and had many discussions with my partner as it wasn't just about me. He would be doing the hands on looking after me, all the housework everything for at least 6 weeks and he was happy to do it. He has also been there as every now and again my emotions take over and I either have floods of tears of rants about why did this have to happen to me. Bless him he did his own research so was prepared for it all.

We both wanted me to have the operation and he even come to the gym with me and followed the endo diet as this was his way of supporting me. He hated not being able to do anything when I was rolling about and crying in pain. He attended all my hospital appointments with me when he could as he wanted to make sure my Gynae knew that I had the support that was needed.

xx

[ginger83]

Wow, it's great to hear that you're recovering so well. I'm really glad you've got your quality of life back x

[Hidden]

I had the same surgery as you 10 weeks ago and I am only just beginning to feel a bit better. I have been put on the drug Livial, as my consultant tells me endometriosis will return if I take the 'standard HRT'. However, I don't think Livial is agreeing with me as I have terrible muscle and joint ache in my calves, hips, neck, shoulders and fingers!!!! I may mention the patches you are on to him and see what he has to say. I am delighted for you...but feel I have a long way to go before I feel like that new woman I so want to be!!!! Jan

[pinkpig2009]

Hi Jan

I suppose I am a lucky to be feeling the way I am so soon after. My Gynae suggested the patches as I had suffered bad reactions to various forms of HRT when used to treat the side effects of Prostrap. The GP that I saw in the local medical centre had done some research into HRT and they way it was used and she thinks that the patches will work best for me and also keep at bay the possibilities of Endo coming back. As with all medications it is trial and error until you get the what is best for you.

xx

[Juleyanne]

Thank you, it is interesting to know what brings endo sufferers to the point they agree or ask for hysterectomy. As a sufferer myself, I can relate to many of the symptoms you outline. The hip, leg, low back pain, stomach and pelvic pain and the horrible effects it often has on bowels and bladder, although no two sufferers get exactly matching symptoms. The fatigue is a huge issue too.

I find the ongoing effects of issues surrounding this condition, together with the condition itself including adhesions pulling and pinching (loose baggy waistbands are the only thing I can bare and sitting is uncomfortable) and ultimately the anxiety and poor quality of sleep that often results from some or all of the above symptoms, can make functioning incredibly hard and at times impossible!

Any major surgery is a big decision but often an inevitable one after years of pain that fails to respond to other surgeries or treatments. Support is vital and understanding and without the hands on support availability, this decision becomes even more difficult. As I a single menopausal woman who lives alone with no children (just a cat), the big decision can quickly become overwhelming and frankly terrifying when you consider 'how you will cope alone' especially if you are unable to afford private aftercare. Of course even with support it is not a light decision and can be incredibly frightening. These forums help address this feeling of isolation and allow sufferers to share experiences and gain support from others at perhaps different stages of treatment and I thank you all for being there for each other.