7 months post t.a HYSTERECTOMY b.s and Energy Levels are still Terrible 😱

[HellyLlewelly]

Of course Im feeling the benefits of not having severe endometriosis pain & adenomyosis boggy womb (can wait sooo much longer to pee these days 🤘) no monthlies either 🤘💃

BUT

Possibly related to disc trouble and weight gain, I have terrible back pain in one area and really low energy levels. Sleep is NOT refreshing me. Apparently my combined hrt is sitting well in my system and bloods are normal, so why the bloody heck do I feel so tired?

I also notice joint pain on relaxing, in my shoulders, upper arms in particular.

The womans physio gave me exercises to limber myself up as believes ive just got some mechanical stiffness and that its not nerve pain or my sacrum as Id possibly thought. My pain has moved since seeing her and her pressure and release technique, from my cocxics general area up to upper left quadrant, dull, gnawing, stiff constant ache.

Her evercises are helping a little but Im just bloody constantly stiff in my back with this dull persisting barge of pain in the back. If I dont do them 1st thing Im buggered for the day!

Ive never felt so stiff when trying to stretch. Im only 39. I used to be highly into high intensity fitness.

I started a womans vitamin this weekend with D and B vits and hope they help soon.

Has anyone encountered this stiffness and tiredness, Im 7 months post op and very low energy.

I thought Id be turning around by this stage, exercising and getting my life back on track. Im miserable lots.

Im on ibuprofen and cocodemol and know the painkillers are not great for energy levels but without them I cant get stuff done at all, child to care for and house to keep. Its very frustrating.

My mood has went really low too.

I cant bring myself to my Doc yet with the back pain I just dont want to leave the house.

Thank you for any advice.

Helly.

[RachaelE]

Hi HellyLlewelly

Sorry to hear you’re not feeling well. Are you on HRT? The tiredness could be due to menopause symptoms on top of the healing that could still be going on inside. It takes a lot longer than people think. I would say it took 2 years for me to feel normal again.

I know you don’t want to go back to your GP but there’s no point being a martyr. Try and make a double appointment so you have time to talk through all your concerns.

Xx

[HellyLlewelly in reply to RachaelE]

Thank you Rachel,

I definately need a double appointment. I saw my GP and unfortunately didn't get to discuss all of what I needed. My son had an accident the night before so the conversation got side tracked in portions!

Dr wouldnt prescribe me Lyrica for pain, said there is too high an addictive quality and can chsnge peoples persinalities etc so that was a no. The trouble is I cant function in this pain.

Today has been worse, even sitting on my sofa with a slight right leaning of my spine whilst putting a nappy on my son I had pain shooting down my left side and it feels like conplete tightness in my abdomen, stiff and painfull, even though Im seeing a womans physiotherapist and doing the exercises recommemded.

I must admit I am struggling. Im really struggling with my mental health and think I need something for depression now.

Im on HRT combined patch and bloods have been done at 2 months and 4 months and it sat fine within levels etc but Im now feeling worse at 7 months. I will give blood next week again and apparently a hormone profile has been requested plus other less tested profiles in the blood as my Dr has talked about Fibro Myalgia and that its an elimination process diagnosis.

Im going to be 40 in January and have never felt worse. My abdominal pain is more relentless since pre Op, its more frequent.

Im resting more and in bed actually more. My thoughts are crashing down around me, did I go through this all for nothing.

Part of it Rachel is the expectation of pain, I have no idea how I should feel at 7 months pain wise, no idea. Stiff and bearing pain?

I should have had good pelvic floor muscles and abdominals as I was for years, a keen fitness enthusiast.

Why on earth do I still feel like my core is in tatters?

Thanks Rachel, when you say Two years is that before serious pain subsided?

I could manage niggles and the odd pain but hoovering for example is still bed riddening me.

I feel so alone. I am glad you replied. I put a few posts on here about slught reoccurrance of my pre surgery pain symptoms and a feeling of an imprint of pain wgere my bad ovarie was during ovulation etc. I hope its not endo symptoms returning but atm dont care as the pain is nothing worth mentioning atm.

Xx

[RachaelE in reply to HellyLlewelly]

I’m sorry you’re still in so much pain. We’re all different, some people get over it relatively quickly, others take longer. For me it was complications from the surgery that caused me pain. I had 2 further ops to sort it all out. I had a granuloma on my vaginal cuff which had to be cauterised and excised under general anaesthetic 8 months after the hysterectomy and then division of adhesions almost a year after the first op. The pain continued for another year after that and I was on gabapentin because my surgeon thought it was nerve pain. He may have been right because it eventually settled and I’m not in pain (much) anymore. Just over 3 years since my hysterectomy and I feel normal again. It is massive surgery, people just don’t realise.

Because you’re relatively young, hormone profiling is appropriate. Are they measuring your testosterone levels as well?

I had, and still have, quite bad abdominal pain. Went down the gastroenterologist route before gynaecology and that made me have a serious look at my diet. I now eat loads more fibre than I used to and avoid dairy as far as possible. It has helped.

I’ve recently started a Pilates class. It seems to be the only form of exercise I can do apart from walking these days. It really helps those core muscles. I fainted at the gym which, apart from the embarrassment, is a bit dangerous as I was on the treadmill at the time! So, I don’t go there anymore.

You’re not alone. I took a while to respond because I’ve cut down on the emails from this network! Take it easy, be good to yourself and don’t beat yourself up. Some days I wonder if it was all worth it but it gets you nowhere because you can’t go back.

Rachael x

[RachaelE in reply to RachaelE]

PS - have you had your B12 level measured? If you had heavy bleeding prior to your surgery you could well be low. Mine was and having booster injections sorted the energy levels out pdq. Xx

[HellyLlewelly in reply to RachaelE]

The B12 and testosterone are interesting ones thank you, the T level was one I needed to speak with the Doc about and didnt get to mention, Im convinced losing Testosterone with my ovaries going is affecting my energy levels.

I understand completely there are times Im on this site and times I am off, its depending on what's happening in life isnt it, we have so many other committments on the go! You cant be there all the time.

Im so reluctant to comment on new hysterectomy peoples posts atm as Im afraid I wont have the positivity they seek.

Your granuola sounds nasty, plus more adhesion tissue? Thats so unfair and unfortunately a surgery complication I hear. I often wonder what is on the reverse of all my scars.

I reckon I healed pretty well I have to feel confident I did just for my sanity, I even feel confident of the whole vaginal canal, internal pelvic area...its the searing back pain I cant get my head around. I am a very top heavy lady and bet/can be rest assured my ample bust and extra stomach weight are putting pressure on my back.

Im also just not 100% sure my bowel is ok yet after the endometriosis was removed. It was the most badly affected. Im very flatulent still and can have bouts of frequent stooling sometimes I just go having sat down to urinate, I told my Dr about it so he is testing for Celiac and a few other things, sometimes wind seems to relieve my pain, possibly, Its just been lately Ive been connecting these dots about my bowel perhaps giving me back pain....

I was just floating back in my minds memory today and know these issues hit me at 19 and by 21 I was having the horrendous pain and stay at home and miss out periods.

Its just frustration and tiredness. I know endometriosis and adenomyosis have affected my who adult life. Im still feeling affected. I will try to be more patient.

I would love an improvement even by year 1.

My physio who recommend the exercises also recommends physio led pilates and I will try that. At the moment even the stretches are a chore as Im doing them in pain.

I hope you enjoy your Pilates.

Ps could you recommend a gel type testosterone I would mind even trying a little just to boost me.

Thanks a million

Helly x

[RachaelE in reply to HellyLlewelly]

Hi Helly

I don’t use testosterone, my GP feels it isn’t right for me but I might ask to be blood tested next time I see her. However, Dr Louise Newson is an expert in menopause and has written this article which says it all.

menopausedoctor.co.uk/menop...

It’s always worth reading up and being fully informed before going to the GP, I find.

Good luck

Rachael. Xx

[HellyLlewelly in reply to RachaelE]

Thanks so much Rachel. To go and slap on the Testosterone Willy Nilly Id probably end up with an even longer beard and God knows what else.

Do you know anything physiologically about hormones like how long does the body hold/store after the ovaries go?

Just as a conversation point.

I love knowing facts about the body!

Helly.

Xx.

[RachaelE in reply to HellyLlewelly]

I think the body has a store of oestrogen in fat cells that will last a couple of months.

As for facial hair with testosterone, as far as I understand it you use a tiny amount on your thigh and you might get a little bit more hair where you apply it, but nowhere else. Personally, I’m a little cautious about it as I had polycystic ovaries so facial hair doesn’t need any encouragement! Tweezers are a girl’s best friend!

I’m guessing from your name that you’re Welsh? If I’m right, have you heard for FTWW (Fair Treatment for Women of Wales). They’re a fantastic support group.

Rachael xx

[HellyLlewelly in reply to RachaelE]

Rachel also had Polycystic ovaries and had an endometrioma chocolate cyst removed from my ovary with mild endometriosis excised in 2012!

I have a hairy face and generally I am like a peach with fuzz all over lol. I come from a hairy family though and we have Moroccan ancestory! Im quite dark haired. Im from Belfast in Northern Ireland. My husband is where the Llewellyn comes from!

I was told I had Polycystic ovaries in 2005 on ultra sound scan or inutero probe type thing that put then on screen I remember they looked like grapes! I had my first ablation in 2005 so I guess this was a mild-ish start to my pain and woes.

I was on the Marena Coil by about 2006 though my body complety rejected it being there and it gave me shuddering pain through my hips and legs.

I often wonder what causes adenomyosis and endometriosis, why at such a young age, really with just 1 sexual partner was I having womb abnormalities, what could have caused my faulty womb?

Are women for any reason more prone to pollycystic ovarian syndrome and endometriosis. Pre childbirth pre surgery, what sets these cells rogue in the body and these nasties to multiply.

Causing us shocking pain and distress and sometimes fertility.

Thanks Rachel

X

H.

[RachaelE in reply to HellyLlewelly]

Gosh, I don’t know why some women get endo and adenomyosis but I read a few years ago that the same gene that causes male pattern baldness in men is responsible for polycystic ovaries. I have 3 brothers and they are all a bit thin on top (one is completely bald). Seems unfair that they loose hair whilst we gain it where we really don’t want it. I have it on my chin, upper lip and peachy fuzz on my jaw bone. Don’t got out before checking in the mirror!

I didn’t tolerate the Mirena at all either. It caused me so much pain and I had to beg them to remove it. Two nights later I lost a unit of blood in the bath with clots the size of my fist. Evil things imho.

Take care

Rachael xx

[HellyLlewelly in reply to RachaelE]

Thats so interesting, flip, my two brothers are doing well to be holding on to their hair in their 30's lol! These womens issues are a hard card to be dealt. I so hear you regarding IUD's, I personally believe women with issues such as ours cannot tolerate them and I get angry hearing how many women get fobbed off with one to help with heavy bleeding. I literally lost a job having to miss days at work with the Marena as it shot radiating pain down my legs but my GP insisted it takes 3-6months to settle so I reluctantly did 6 months before having family planning remove it in their walk in clinic! I remeber the pain and horrendous period that lasted 2 weeks after. As a timid 20 something I did everything the Dr asked and rarely questioned any prognosis. I still to this day say my body rejected something foreign being in there.

I pray there are scientists sitting trying to create a cure for Endometriosis. Or at least its genetic profile or such so that it could be eliminated from being passed on.

I still feel nervous talking about these conditions to people who are not really in the know, I hate that feeling of being judged for having to have had my reproductive system wiped for "womans issues".

X

Helly.