Recent Hysterectomy – Jane’s story

Hi Ladies, I joined the site back in November but this is my first time posting. I’m 39 and a single Mum to my 5 year old son. I have suffered with Endometriosis since my mid-twenties and subsequently had 3 operations to remove the growth, after which I felt much improved until it returned and I began the same repeat of surgery!

After the birth of my son in 2009 everything seemed fine until the end of 2012 when the niggling lower back and hip pain started up again, exaggerating when I had my period. By July 2013 the pain became non-cyclical and I was in constant pain, I had extreme bloating and would start the day in my usual clothes only to have to change within a few hours to accommodate my expanding waistline. My whole lower body changed shape, I was bloated, had severe cramps and at times pain that felt like labour contractions, the pain radiated round my lower back, both hips and down my thighs. I was having regular menses which were painful and heavy but short lasting 3-5 days. I did not have any bleeding between periods.

Knowing my body as I do, I suspected the Endo had returned and after a long wait had a Laparoscopy in October 2013. It was an extremely confusing time thereafter, as I was told immediately after surgery (by the surgeon who carried out the proceedure) that no Endo was found but the surgeon suspected I had Adenomyosis and explained treatment option of a Hysterectomy. So I was starting to come to terms with this profound piece of news when I received my discharge summary one week later which had no mention of Adenomyosis, rather that there was ‘no gynaecological problem’ and advised I had IBS and should seek further investigations. I immediately contacted the PALS team at my local hospital and within 3 days had an appointment with my Consultant, who was also present during my surgery. He was of no help and could only tell me ‘different people will have a different opinion’. On my enquiry about having been told I would need a hysterectomy and that he was adamant I had IBS. So I was left none the wiser – still with 2 surgeons who had had massively opposing findings but who were both present at time of surgery.

I felt deep down that I did not have IBS. I had never had any problems with my bowels and began a long process of exploring and researching my symptoms. Low and behold I realised that a lot of the symptoms I had were similar to those of IBS; severe bloating, low abdominal cramps, lower back ache, poor energy and even hip and thigh pain. Although I felt I did not have IBS I went to see a Gastroenterologist at the end of October 2013. I paid privately as I was desperate for more speedy action than waiting for an NHS referral. At this point I had been off sick from work for 3½ months and was becoming quite low in mood, remaining in pain and feeling unheard and uncared for. The impact on my ability to be an involved and active Mum to my son was very upsetting, I couldn’t play much with him, other than board games, I couldn’t pick him up, struggled to walk him to school, couldn’t stand for long and was short tempered due to extreme frustration and pain. I was taking a lot of analgesia and had been prescribed Tramadol which worked initially but I had dreadful side effects from the Tramadol, the worst of which was visual hallucinations. I was desperate to get off the medication but what then would become of the pain? The Gastroenterologist suggested trying a wheat-free diet for 4 weeks followed by a dairy-free diet for 4 weeks if there was no improvement in the pain. I did both, rather reluctantly, however felt I should explore all avenues and who knows, maybe it would help? It made no difference at all.

It was a very difficult time during which I sought a second opinion. In January 2014 I revisited the whole story again with a very kind and caring Consultant Gynaecologist in a neighbouring county. It was the best thing I did. I was started on Prostap injections at the end of January, once monthly for 6 months to try to ascertain if the pain I was experiencing was indeed gynaecological. By March/April 2014 I was pain free and had returned to work. I couldn’t believe the difference. I had artificial menopausal symptoms to contend with and was taking a combined HRT but I felt amazing. My body shape returned to usual and once again I could wear my normal clothes, as opposed to leggings, joggers and long smock style tops – some of which were maternity wear to accommodate my distention (no, the irony of it all was not lost on me!!)

I had my last Prostap injection end of June 2014; I had been advised by my care team that the benefits of the Prostap could last anything between several months to longer but that if the pain returned then the treatment option would be a total hysterectomy with bilateral salipingo oophorectomy.

To my utter dismay the pain returned with full force early August 2014. I had noticed a few weeks earlier that my body shape was changing, my jeans tighter and more uncomfortable and the bloating had gradually crept in. I was forced to go off sick from work once more and immediately began the process of getting back to be seen in Clinic. My Consultant offered me the choice of an investigative laparoscopy and treatment before going ahead with the Hysterectomy, which I had 2nd November 2014. It turned out I had endometriosis, a cyst on my left ovary and a lot of adhesions which were treated. It was also noted that my uterus was bulky, in keep with adenomyosis. Before I was discharged from hospital (I only stayed overnight) I knew that the procedure had made no difference to the pain, once again needing more analgesia. My Consultant offered me the choice of another round of Prostap injections or surgery for Hysterectomy. I couldn’t face the idea of feeling well again on Prostap only for it all to be taken away again once the stopped so I opted for the surgery, nor waiting for the inevitable that I would need a hysterectomy. I just wanted to get on with my life.

I had a total laparoscopic vaginal assisted hysterectomy with both fallopian tubes and my left ovary removed on 27th November 2014. Prior to surgery my Consultant discussed a recent specialist gynaecological meeting she had attended in France where there were positive benefits found in leaving one or both ovaries if they appeared healthy and I told her I trusted her judgement whether to leave/take one or both ovaries at time of surgery. I am now 7 weeks post-surgery. I immediately felt an improvement in the pain, in fact the pain I had before surgery was gone, and all that remained was the surgical pain and discomfort, plus some nerve pain in my left thigh which comes and goes. After a couple of weeks I was a lot more mobile and began feeling strong enough to start gentle exercise walking and swimming. I had my Mum stay with my for the first 2 weeks then pretty much from week 3 I was back to doing light household chores. I have had amazing support from friends and neighbours who have hoovered, shopped, scrubbed the bathroom and taken my son to school, not to mention kept me company and supported me emotionally.

From week 5-6 I started walking twice daily, at a good pace for 30-45 minutes; if I had a niggle then I would slow down and rest. The thing is, in the past week, I have noticed that I am having pain. Initially I thought I had overdone it physically, especially with swimming as I felt little resistance whilst in the water so may have worked my body too hard. I have been gentle on my body and rested well for the past 6 days but it doesn’t seem to be helping improve the pain. There is at times a pulling sensation with a deep aching pain where my uterus would be, plus some sharp shooting pains around my hips, predominantly my right hip and a deep dull ache at my lower back has gradually crept in.

I try to convince myself that there is so much that has yet to heal internally and that my lower back pain could be muscle ache – given that I have had a poor level of mobility and exercise for the past 18+ month and I am aware that my muscles will take a while to become stronger. However, I am now questioning whether I have had major surgery unnecessarily. Histology results confirmed presence of endometriosis in the left ovary and uterus. I am anticipating getting more detail about where the endometriosis was found as I understand that if it is within the myometrium then it would be classed as adenomyosis. I am due to see my Consultant on 29th January and am hoping to get more information and possibly reassurance that all this has not been futile.

I know it’s still early days but have any of you ladies had similar pain post op which has then either settled down or proven to be something else? As I still have my right ovary, I am kind of grasping on to this being the source of the remaining pain but I have to admit, I am feeling rather sad and bewildered right now. I remain off sick from work and am anticipating a gradual return early February.

Thank you for listening,
Warm wishes,
Jane x

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4 comments

  1. Hello Jane
    just to say I hope you get a final resolution soon – you’ve been so brave managing all that pain over the timeframe and keeping on with everything else. I will be having a hysterectomy around may…I’ve just joined the site…just back from seeing the Consultant today after finding out Christmas Eve the source of my trouble is a large lesion on outside of uterus…I had mri and had results this week and no suspected malignancy so that is a relief. I agree with the mental strain – this site is a real blessing. Warm wishes. Susan x

  2. Dear Jane,
    Stay strong, try not to worry and ask your consultant why they think you are still in pain. There could be all sorts of reasons…and remember you’ve had a major operation – quite recently.
    My op (STAH and BSO) was at the end of June and after 12 weeks I was really concerned I was still in pain. My consultant was very quickly able to pinpoint a trigger point I have that was causing pain throughout my right side and it was really difficult to sit comfortably and I couldn’t bend. I still have the trigger point but it is less active now – though it soon tells me if I do too much!! And walking really helps to keep it at bay.
    I had both ovaries removed as neither were salvageable and my consultant was keen for me to have a low steady dose of oestrogen (I’m 41), rather than one that cycles, to make the chance of the endometriosis returning very small.
    Our bodies can get used to feeling pain and sometimes we feel more if we expect it. Have you ever tried cranial osteopathy? – I can recommend it – it got me mobile again before my op.
    Look after yourself, Rosie

  3. Jane,

    Before I start I do apologise for the text being all over the place it is just that had to say that I have read your story to my daughter and she could not believe that someone was and has gone through similar to myself. I could go on forever as it has been on going for so long.

    I am almost ten years older and my children all grown, I had a total hystorectomy on 17th November 2014 and am still recovering due to being unwell whilst in hospital and it being a bit more difficult than anticipated, also having had a collection of fluid that has only just gone and I still have an infection internally as I found out today and am awaiting the results of the swabs taken.

    I too am due back at work in February and back to see the consultant in March.

    My pain started about ten years ago. Trying to get someone to believe me and understand that it was so bad and got worse if I sat down for any length has been almost impossible. I have been told it was my posture, sent for physio, I stand quite upright and apparently this was wrong? I was advised it could of been arthritic.

    When we moved about three years ago I went to the GP to be advised that he was unsure of my problem, I was offered painkillers, however he did say but sometimes he got a pain in his leg and couldn’t explain it , these things do happen?

    After persistence, though my family would disagree they think I was too soft, I got offered a scan in 2013 a fibroid was found, though I did not have heavy periods, having had a balloon ablation some years previous. I met with the Dr to be asked well do you want to do anything about it? I would try anything to alleviate the pain, so I said of course! After many visits chasing the said Dr, whom I might add I will not see anymore, I had a laparoscopy, this did not achieve anything. Although I was given prostap for three months, nothing happened.

    My daughter did research on symptoms etc , mainly because I was so disheartened by it all, and found a website about adenomyosis. She wrote it down and said take it to the said Dr and get her to look at it and your symptoms. I did she disregarded and just prescribed more pain relief.

    After numerous months of visits and finally my being at breaking point, and many tears through pain and frustration, my Dr prescribed me some stronger medication, varying types even meds for depression and epilepsy. She offered to sign me off for a couple of weeks I declined but then i just had enough I was exhausted , I cannot remember the last time I have slept through the night, I went back and she did sign me off with exhaustion and I had two weeks on the tablets that made me unsteady and slurred my speech, but at least I could say I had tried them.

    I got my hystorectomy date and was looking forward to eventually , hopefully, being pain free.

    Unfortunately the op took approx 5 hours and I was very poorly a few days after, needing a transfusion after blacking out, whilst on the commode, not so dignified!

    My discharge was ok, though family wished they had kept me in as I continued to be very poorly, unable to eat or keep food down and , well I could go on and on.

    I am still unable to take carjourneys for much more than a few miles and , although I am walking, it proves extremely tiring and once home I hurt for a bit.

    My pain feels like it is coming back with a vengeance, I asked today, after my internal scan and meeting my consultant, if it could be the healing process but not definitive answer yet and it appears I still have some internal healing to deal with. I have to say, initially after the op my pain went! I was so relieved, granted there was the post op pain but nothing like what I have had for so many years.

    I am hoping it will go but failing that I am back to the drawing board.

    I do hope you get some answers and manage to start to feel well

    Kind Regards
    Tracy

  4. Hi Jane I can’t believe your story is so similar to mine had a laperoscopy May ,2014 as thought I had endemitriosis only to find I hadn’t told to return to docs if pain returns which it dud ten fold when private had mri scan and results 5 days later had 3 cysts 2 in my tubes and one in my womb and the crippling pain was adenomyosis. No choice full hysterectomy was performed on 4th November and stayed in hospital 4 nights. Returned home and 5-6 weeks could finally see I was on the RD to recovery couldnt believe how slow and long the recovery was I returned to work 7th January on a phase returned to work part time I gradually found myself getting stronger I am now back to work full time after two weeks part time. Returned to docs as have an infection now by my wound but apart from that so glad I had operation and have had no further labour pains would recommend op just don’t expect too much too soon as it’s a long road to recovery good luck to you all who need one just do as you are told and do nothing for weeks like me xx

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