The end of endometriosis thanks to da-Vinci – Lynnann’s story

I have always had painful periods they made me physically unwell. Sometimes I’d have this irritating right sided pain resting on my shoulder blade. I’d been in hospital and seen many consultant with multiple mysterious illnesses.

At 45 yrs. I was diagnosed with endometriosis to my bowel with treatment my symptoms were manageable. Until I was 48, when it came back and worse, I was referred back to a gynaecologist, his care was terrible after tests, I was told I had a bulky uterus, and the Mirena coil was inserted. I had awful side effects, vaginal pain and discharge, I begged for its removal, it took a year of arguing with the consultant to get it removed I was disheartened, after chatting to my GP I sort a second opinion this time I chose someone who was experienced in endometriosis, I found him on the GMC website. My new consultant did the same tests as I had done earlier and I was diagnosed with adenomyosis, fibroids, uterine polyps, ovarian cyst and endometriosis. I cried as I knew I was unwell. I was offered injections or ablation, and a hysterectomy with removal of ovaries due to ovarian cysts. I was terrified even though I knew in my heart I needed the hysterectomy.

I went away to think and researched everything especially the da-Vinci robot as this is what was recommended for me, I could have had the traditional laparoscopic method, but I was reassured when I met both the surgeons who were to do my surgery, and agreed to surgery the da-Vinci robotic surgery needs x2 surgeons one watches the 3 d image of your insides on a screen and gives instructions the other operates the robotic hand. You have three puncture incisions were the robot arms go in to your abdomen. (How freaky is that)

The complications and recovery rates are the same as that for laparoscopic surgery, if not better, and in my case it was done so they could see inside clearly and this helped the surgeon to eradicate all my endometriosis safely without cutting me open. One of the good things about this surgery was I didn’t need a catheter in. (I had a history of UTIs).

Pre op I wasn’t well, I ate healthily plenty of protein to promote healing, but I was so stressed I wanted to clean the house and prepare the family for me being out of action. Yet I was working fulltime I ended up being put on the sick, 1 week before my surgery. Now in hind sight I’m glad, as it may have slowed my recovery if I was exhausted.

With my bag packed with the usual, but‌ nighties instead of pyjamas and plenty bottled water. On the 27/01/2016 I had a total abdominal hysterectomy with bilateral salpingo-oophorectomy and ureterolysis. The surgery went well. However they found an endometrioma (ovarian cyst) it had grown outside my ovary and attached itself to my abdominal and stomach wall. The penny dropped this was why I had been so unwell. Any how my surgery was about 3 hours. The consultant and the theatre care was outstanding. The ward was a bit distressing, buzzers going and wondering confused patients, I had little pain until early hour’s 3am ish the nurses acted swiftly and gave me an injection. I was so glad to go home the next day as I had not slept that well, I remember walking so slowly to the car I felt everything would drop out. But I just kept on walking.

On discharge I was told to keep ted stocking on for 6 weeks and I was given pelvic floor exercise
(I have been so strict and done these as I was told). I was told to expect a lot of wind pain, due to the gas pumped in to your abdomen during surgery, I’m a wimp so I dreaded it, but it wasn’t too bad I sucked on multiple packs of spearmint sweets and walked up and down trying to pass wind. My family laughed. My biggest challenge was to open my bowels, normally I go every day, I became obsessed as it was 4 days before I eventually started to go I drank well and ate buckets of fruit, I tried suppositories/Senna /dulcolax but ended up buying Movicol at the pharmacy (you don’t need a prescription) I was told your bowel is paralysed after surgery and it will start when its ready and it did.

Pain wasn’t too bad, I took naproxen 250mg x3 per day with paracetamol for break through pain and occasionally codeine. Boredom was a big issue, so I down loaded all of Downton Abbey and joined a hysterectomy group to keep track of others.

At four weeks I was walking half an hour morning and night. My GP cleared me to drive and I got back the freedom to see friends.

At 6 weeks the ted’s came off and socialising a few hours only at the pub. Light housework, dishes, cooking a bit of house work, (but not standing for longer than 20 mins). I got frisky with my lovely husband we did everything but IT!

I have always showered daily and bought some feminine body wash its gentle for down below, but now I can have a bath I added some mineral salts, but no bubbles, resulted in a few stomach cramps, I ended up taking extra painkillers.

8weeks. I’m still napping in the afternoon. I achieved ultimate intimacy with my lovely husband; yes sex with help of KY Jelly. It went well and things will improve.

Yesterday my histology reports came back all clear. Now I can move quickly forward. I still have my return to work to tackle and I’m holding out for 12 weeks and a phased return. I believe once you’re at work you’ll go back to the way you used to be and that means running around not having lunch and not having time to drink, lifting bending, squatting, all the things I’m not to do. Yes you’ve got it, I’m a nurse, so I’m taking no chances with prolapse or vaginal cuff dehiscence.

My three puncture wounds to my abdomen are noticeable but totally healed. Yet I think the biggest hurdle is that menopause is here .I am suffering, I think I’m going mad so I’ve started Menopace plus and using Replens for vaginal dryness (check them out on the Boots reviews).

At this point I will bid you well and good luck on your health pathway hope all goes well. Lynnann, surgery age 52ys.

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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

Linda Parkinson-Hardman

Transformational counsellor, coach and women's health advocate. Professionally I'm an information scientist who specialises in change management, culture change and adoption of digital technologies in large enterprises and organisations. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

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7 Responses

  1. CathyP56 says:

    Hi I am 25 days post -op after having a total Hysterectomy. I feel ok and energy levels are good although notice if I stand for too long or try to do too much I get a discharge. Sleeping has been awful, can’t seem to settle even though I haven’t slept during the day and am constantly taking off the duvet to cool down then pull it on again due to too cold. One question I would like to ask are all of you getting a 6 week check up? I haven’t been given this by my consultant. In fact I wasn’t really given any post op advice from hospital staff or doctors. I had to email my consultant to find out about my stitches and whether they were dissolvable or not and to find out if they found anything which they did Adenomyosis which made me feel better as I felt I wasn’t taken very seriously by my GP. I have just been left to get on with my recovery – then I found this site which is brilliant. I would love to more about the size of my uterus and how long it all took etc. In the US they seem to get all the info (I know they pay for it). Would like to know others experience with post -op info etc. The only way seems to do a request for my hospital records.
    many thanks
    Cathy

  2. Ling says:

    Thanks for the information, very useful.

    I had been in severe period pain menstrual cramps for more than 15 years, can’t lay down, can’t sit, periods was hell to me.

    Not any more, two years ago, I found comfortable periods pad from http://www.periodpain.net, this saved my life, all the pain and discomfort gone.

    Hope this information can help people too, it is really good for periods. It can get rid of any pain during periods.

  3. wendy says:

    This story is so like my own. Mine was described as stage 4 very severe I gather. I narrowly missed having a stoma fitted and it took 5 incisions so that they could remove adhesions, cysts and endo. However this helped my recovery. 5 years before I had 1 ovary removed with a large chocolate cyst the size of a large orange and cysts removed from the other ovary and repair due to endometriosis. This op was open and much harder recovery. Having a drain etc. didn’t help!
    I was advised due to the full hysterectomy not to use HRT for 6 months which was hard and I’ve been on the highest dose of livial HRT now for 20months. This helps most of the symptoms but I’m putting loads of weight on despite a healthy diet (almond milk, low caffeine, low alcohol, lots water etc), lots and lots of exercise (I have a PT) supplements (fish oil and vitamin B). I have just seen the nurse for my HRT review and she has suggested trying Elleste 2mg to see if that helps the weight issue. I’m only 44 and so I think that’s why the dose is high. I’m really not sure what is the best thing to do. I HATE the weight gain it’s really getting me down and seems VERY common having read lots of blogs.
    Have you been given any advise about HRT? As you seem to have similar medical history to me it would be more relevant than many posts I read.
    I hope you are continuing to make a good recovery. PS try the YES website for oils etc. which are organic to help your sex life!

  4. lynnann says:

    Hi Jane
    in the beginning I felt the same at your stage (I was a malinger)
    However with my constant swollen belly and niggling pains I was referred back to consultant at 11 weeks I was told if I have pains and don’t feel ready for work l im obviously not ready all the pains where my insides settling and the pins and needles are nerve pains which can be very painful and years ago people were off at least 12 weeks. Any how I also was re assured and have now commenced low dose hormones.
    What I would say to you is listen to your body if you feel not right to work, then talk to you all your Gp he/she will not sign you off .
    Get your Gp to do a maybe fit for work and tick the boxes on your fit note and find out you HR policy at work. Again occupational health have a reasponsibility to you.As all employers have to adhere to HSE guidance so talk to them. Good luck
    Lynann

  5. Virginia smith says:

    Is it normal when your bleeding has settled and you start your light exercise and getting up and down a little more to start bleeding more also I’m two weeks on Monday post op am not taking much painkillers only now and again is I need them but get twinges almost like little stabbing pains and very often in the night wasn’t sure if this was normal

  6. Jane Scadding says:

    Thanks for posting your story, good to hear from another nurse. The hospital Dr only gave me a 4 week sick note (TAH) which I went to my GP to extend today – she gave me another 4 weeks, but her computer guidelines said post op return to work was 4-6weeks even in a ‘heavy’ job. Already feel like I’m malingering, despite the fact that a half hour dog walk wipes me out. I keep reading how this is major surgery and felt i was making reasonable progress but now worrying about work. How were your occupation health dept? Have they been they supportive or made you feel pressured to return?

  7. Jv says:

    Wow, I think we have had identical issues, I am 39, all the same diagnosis. I am 6 days post op and just looking for any advice, I hadn’t given the menopause much thought, but now it is here I am taking some notice. I am glad there is light at the end of the tunnel. My experience has been ok so far, like you said, the boredom is probably the worst when you are used to being busy. Take care x

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