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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