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5 weeks to go to hysterectomy! – Donna’s Story

Hi, my name is Donna and I am 40 years old, married with two beautiful girls aged 13 & 9..and here is my story so far…As long as I can remember, I have always had heavy periods.. After having my first daughter, they got worse but being a woman I just got on with it. A few months after having daughter no.2 I noticed that I was feeling discomfort (more then usual) at ovulation. The years went on and the pain became a lot worse while on my period.. Sometimes unable to get out of bed without falling onto my knees on the floor and crawling round the room.

In February this year I went to my GP to say enough was enough.. I wanted to be referred. They had already tried me on tablets and they didn’t work. I mentioned the word endometriosis but it was brushed aside. I went for a scan in may and they found a 8.4cm cyst on my right ovary so I was told I’d have a laparoscopy… Just before this procedure last week I had another scan which showed cysts on my other ovary and some in my cervix.

When I awoke from the laparoscopy I was told that I have severe endometriosis and would have to have a full hysterectomy in a few weeks… I’m booked in on 6th November… I have mixed feelings. I’ve cried, been angry, explained it to my girls, read a lot of info. And am still very confused!!

My hubby is feeling low at the mo.. I think he is concerned about “us” afterwards.. I’m finding this really hard at the moment as I feel I can not say all my worries.. I know he is only worried because he loves me and after 20 years together he’s worried about our closeness.

I don’t feel to worried about the operation.. It’s the recovery side. I’m too independent to sit indoors watching Jeremy Kyle all day!! Lol

So.. Here’s to the next 5 weeks and one more period!! (Surely that’s worth a party!!!) Any advice on recovery would be fantastic…. Thank you x

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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 :-)

This Post Has 17 Comments
  1. I am 28 years old and about to have a full hystorectomy on the 11th of February……I have severe endometriosis and have had several miscarriages due to this herendous disease….i got lucky almost 8 years ago on Febraury 16th 2005 and gave birth to a happy healthy little boy who I am thankful for everyday!! I know some women with this condition do not get the chance to have children because the scar tissue prevents it. I am now in horrific pain with every period and found out i have irritable bowel syndrome and interstitial cystitis witch both cause more pain to top off the pain from the endo. I have never been one to have a hi pain tolerance and I am sorry to say I am at my breaking point. So I have agreed to have the hystorectomy and to have a full at that because my doctor says that taking the ovaries and all will be my best coarse because the ovaries seem to stop the endo once removed….I am terrified!! 28 years old with a very active 8 year old little boy a great job….and a great marriage….Will this effect my marriage..my health my life??? I do not know how much more misery I can withstand because of the health issues I have but I feel I am at an impass surgery (which will be my 3rd in the past year) which may or may not help my pain levels….or continue to suffer with the daily torment I have now.

  2. I’m suppose to have a total hysterectomy and I’m only 40. Apparently I have large cysts and endo everywhere. I’m so anxious and scared about recovery. Would love to read your blog!!

  3. It’s not unusual to have the emotional dilemma you face Mandy. The key to making the right decision lies in the information you gather, as it’s only by reading through everything that you can decide what is and isn’t right for you.

  4. Hi, after a number of laporoscopys to diagnose and treat endometriosisI have recently had a hysterectomy suggested to me. I am a 48 year old woman who has never had children (always wanted my own child but only met man of my dreams in 2005 and he had vasectomy when with first wife!). I have had horrendous pain for 12,months now and although my head says have hysterectomy to get rid of pain my heart has yet to catch up. Really scared and worried about affect of hysterectomy on my emotions. All thoughts appreciated.

    Mandy

  5. Keep in touch and we can recover together..!! As I’ve said in a different reply message.. I only found out that I had endo 3 weeks ago so I’ve not really had a lot of chance to stress and worry about this.. This web site is fab.. Really helpful and honest.. I was telling the nurse about it when I had my pre op assessment this week.. It’s not like all the leaflets that you are given.. It’s stories from the heart and that are real.. Try not to stress too much.. Easier said then done I know x

  6. Hi.. Thank you..
    I feel strange about the op as it was only 3 weeks ago that I found out that I had endo and although the pain was horrible.. I coped with it..!! And now that pain is going to be replaced with another one… And a early menopause!!! Joy!!!!

  7. Thank you.. Apparently my consultant likes to leave it 6 weeks before he starts you on hrt.. I’m really emotional anyway and have been known to cry at adverts so maybe there will be no change for me!! Lol
    Glad you are feeling ok now… I had my pre op ass last week and am now on iron tablets as my iron levels are low and my blood pressure is up.. Off for a relaxing (hopefully) week with hubby and my 2 girls in a log cabin so hopefully the stress will fall away!! Lol.. Thank you for you reply x

  8. i know what you are going through i also go in for a full hysterectomy 0n the 12th nov and im so frightened

  9. Hi, I have just had full hysterectomy due to endometriosis. They managed to save one ovary. I am on day 5 and still in lots of pain, but pleased to have finally got rid of this disease. I wish you luck with your operation, make the most of your days before you go in, I’m just a little frustrated at being able to do so little, but it’s early days. Keep us posted..x

  10. Thank you everyone for your comments… Less then 3 weeks to go now… I’m too busy trying to tie up loose ends at work to think about it too much in the day (I’m a manager in retail.. Not the best time to be off of work really!!) and I’ve just booked a log cabin to be away for half term with hubby and girls.. That should stop me stressing a bit!
    I also thought of writing a diary before and after op..reading your blog would be great.. If Linda could forward you my email address I would be interested in reading it!!
    Thanks again for help,advice and chat… Knowing there are others going through this and just been through it really helps!!
    D x

  11. Hi Donna

    I’m now 4 weeks post op. I was able to keep my ovaries so I can’t answer on that front but after the first few days it wasn’t so bad. I made sure I walked a little bit 3 times a day from the outset. I came out of hospital on day 3. My husband was great at getting the kids ready and to school and friends had them for playdates or dropped them back to me after school. I got dressed before they left for school and went for my first walk as they left. You need plenty of lying down time but interspersed with movement. By week two I could walk them to school and now I’m doing most of what I could do before. Plan a little drive round the block today!

  12. Hi Rebecca, I’ve edited out the email address you published as everyone would see it and in a few months time you will probably get in touch to ask to remove it. If anyone wants to get in touch with you they just need to say so here and I’ll send them your email address 🙂

  13. Hi Donna, I had a total hysterectomy 5 months ago….. during my recovery I wrote a blog, not really about the medical side, just day to day stuff and how I have coped and how my husband has reacted…. I could message it to you?

  14. Hi I am now 4 weeks post surgery after a total hysterectomy due to severe endometriosis. I have to be honest in that its been harder than I thought mostly because I am so independent and I couldn’t take many of the strong painkillers they give you in hospital! I really had a lot of pain the first 3 weeks but that’s now much better as is just general moving around now. I would also say that I started having hot flushes and feeling really emotional about 2 weeks after but then started Hrt (i’m only 40 so didnt have much choice)and now feel much better and am no longer crying at adverts on the tv! Really hope everything goes well for you, good luck

  15. Oooh, that’s a tough question to answer Donna as it could kick in immediately or 12 months down the line, it really depends on how close you were to the menopause and how much oestrogen you were producing just before the op.

  16. I just thought I’d update my last story….. I’m now 4 weeks till the op and have just started my last ever period… Painful as ever but in a bizarre way I feel I’ve got one over on it!! Lol

    I’ve had a long chat with hubby about all my worries and concerns and I’ve printed off the recovery chart for him and the girls to read.

    I’m still ok about the operation.. It’s not something I can control so it’s not worth getting stressed about!

    I’ve suffered with a pain above my right breast and over my shoulder for the last week and was told its anxiety.. I’m really stressed about being off work for all that time! I’m a retail manager and this time of year is my favourite time at work.. I have a great team though so I know I should stop worrying!!!!

    Just a quick question for people that have had a total hysterectomy…. When did the surgery menopause kick in…. What did you take… Did you gain a lot of weight…how long will it last????? (Ok so it was more then one question….)

    Many thanks Ladies xxx

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