Hysterectomy and still in pain

[PHOEBEJO1]

Hi I have experienced the same, I had my full hysterectomy last March, they found endo in my pelvis and decided not to remove it and I have been suffering with all my same symptoms again. It never felt like they ever stopped to be honest, I just thought I had to give myself time to heal. I am going back to the hospital next week to see the menopause clinic and going to ask for another operation it’s so depressing! It feels like life’s not worth living with all this pain and anxiety. Just wish they had dealt with it properly the first time round! Can anyone off me any hope? Thanks Sarah

[luthien]

Unfortunately a hysterectomy will not stop endo growth; our bodies (well all mammals including males) produce low levels of oestrogen, which endo uses to grow. Endo when in large enough growths can then produce it's own oestrogen speeding up the process.

As you haven't had your endo removed, but have had your ovaries removed, your current endo will still be there and will still give you exactly the same symptoms, but it may be that the hysterectomy will slow it's growth.

A hysterectomy is often forced upon women as a cure because it removes the ovaries, this isn't the case. It is a form of treatment much like hormones but over time the end result will still be a laparoscopy to excise the endo. Only after that will you have reduced symptoms.

You need to see an endo specialist, most general gynae specialist aren't skilled enough to remove endo properly. And as in your case they just whip out the uterus and ovaries as that's the only experience / skill they have to treat endo. It's horrible that we get told it's a cure, or that it'll reverse it and make it all better.

Have a look at the BSGE website for guidance, specialists and clinics, they'll be able to offer advice and discuss what your options are. Most likely they'll suggest a lap to remove endo so be prepared for that info. You can have a look at the NICE website for NICE endometriosis guidelines; these are what a specialist / center should follow for correct treatment of endometriosis, including correct advice. I'll send you a link to both of these as we can't put them on here.

I know it's not the good news you want, but it's just honest xx

[PHOEBEJO1 in reply to luthien]

Thank you so much for your reply as I feel like I have been going mad and that my symptoms are psychological!! I am with Guys Hospital Endometriosis clinic there. They are meant to be specialists! I will check out the websites you mentioned. Also I am on HRT tibilone because when I had the many Zoladex injections my bones are now really weak oesteoperosis so they gave me that and to stop menopause. Have you found any dietary changes that have helped with endo ?

I have also noticed my endo flares up with stress and anxiety and have been taking citalopram 20 mgs for those symptoms but recently reduced it down to 10 mgs with doctors support but that first monthly cycle has put me right back into full on anxiety and really low mood! It really affects every part of my life! Sarah x

[luthien in reply to PHOEBEJO1]

I've reduced my dairy and gluten intake to almost nothing. I find that during my endo flareup week (around my period) I need to cut out gluten, dairy and sugar altogether or as minimal as possible, as recently I found it is helping.

Gluten is an inflammatory so it can cause bloating anyway, not to mention stomach upset and this in turn can affect hormones and absorption of essential vitamins and minerals. If you want to give cutting out stuff a go, I'd suggest removing a food group from your diet for a month and see how it changes things. So for example cut out milk, but keep everything else the same, then if that doesn't change anything add it back in and cut out bread, then see. Also consider red meats and soy, as these cause the same problem in the body as gluten.

I found I don't do dairy, but can still do cheese and yoghurt, I can't do highly processed bread and pasta.

Ah no poor you with the anxiety; have you tried yoga classes? It works for being more focussed on you and the now plus stretching and breathing really helps sort the pain out. Aromatherapy I find really good for calming. You can get aromatherapy bracelets now: I got mine off amazon, you put a few drops of essential oils on the little sponge in the middle and then because it's next to your wrist it gets warm and smells

I've taken up polefitness for de stressing; it isn't as scary as people think, it's sooooo much fun and that helps distress. Plus it's the only exercise I can do during my endo flareups.

I'm looking into acupuncture and reflexology for pain management.

[PHOEBEJO1 in reply to luthien]

Thank you for this, yes I gave up gluten a 18 months ago and it has made a huge difference, do dairy free yoghurt and milk but still eat cheese. My biggest issue is sugar, when I feel the pain start I reach for sugar but I know it’s only a temporary high and I pay the price later! I struggle with a yoga but really like Pilates, I should go back to that and I do spin classes weekly when I feel well enough! Thank you for all of your support it has really lifted me and made me feel like I am not going mad! It’s given me the courage to be assertive next week at my appointment with the doctor to insist on another laparoscopy to get rid of the endo in my pelvis!

Sarah x

[luthien in reply to PHOEBEJO1]

yay

[Doggiedogmom1973]

Hello PHOEBEJO1,

I'm sorry to hear about this, and sorry to hear you had a hysterectomy. This could've most likely been 100% advoidable if you had a surgeron that was skilled enough to removed the actual cause of the pain, which is the endometriosis, (properly) to begin with. If you've been struggling this long i reccommend you read this book it explains all your pain, written by the best endometriosis doctor in the world "The doctor will see you now", author tamer seckin, MD.

All the best with this read.....xoxoxo.

[PHOEBEJO1 in reply to Doggiedogmom1973]

Thank you for your suggestion on the book, I have just got it on my kindle!

Sarah x

[PHOEBEJO1 in reply to PHOEBEJO1]

Hi, I have just started to read the book, which is brilliant! Do you know who offers the deep excision Surgey in London/ Uk? I am under Guys Hospital endometriosis clinic in London. I would even consider going private if I thought I could get an end to my symptoms? Do you know of any doctors that perform it?

Thanks again for your help

Sarah x

[RicEndoUK in reply to PHOEBEJO1]

Hi PHOEBEJO1,

We do ask that people don't recommend specific doctors or hospitals. We appreciate that people want to find the best possible hospital for their treatment, but people's experiences of the same hospital or doctors can often be very different.

Perhaps if someone has a response to your question, they could private message you.

Thank you for your understanding.

RicEndoUK

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