Evening all,I had a hysterectomy/ ovaries out/excision surgery 2 weeks ago by a BSGE specialist. I had DIE mainly in recto - vaginal septum. Previously wrapped around appendix etc too. I've had bladder symptoms for along time but I've had no investigations. Which I've mentioned to Consultant and team on numerous occasions. I mentioned it again the morning of the op but they said they'd review afterwards. They've put me on Evorel conti patches which have convinced me more than ever that I have endometriosis in my bladder as it has flared up the pain. I've had to come off them. Has anyone else had bladder discomfort/pain on HRT which has been indicative of endo there? Overall I feel better after surgery but I'm sad that I'm still struggling. I don't think it's recovery pains as it's been worse since starting HRT 10 days after surgery.
Bladder endo and HRT: Evening all,I had a... - Endometriosis UK
Bladder endo and HRT
I won't take hrt I'm trying hard not to because of endometriosis, adeno I have peppermint tea it seems to help inflammation I take tumeric too. It's a slow job but best to see how you go before hrt if you can. It seems to bring it back on for so many people.
Thank you. Can I ask if you've had a hysterectomy? I'm not having any side effects e.g hot flushes etc but vaginal dryness was evil when I was on Decapeptyl/Zoladex which is why I thought I'd try HRT. They did say on the morning of the surgery that the difficulty but was going to be to get the HRT balanced! I feel more like myself when not on it! It's all so confusing!!
Yes I'm suc months post op hysterectomy bilateral oophectomy pod obliterated by scarring had to shave from bladder etc fibroid scarring very severe. I'm ok now but still get pains every four weeks as if period first one was awful but more capable with now with meds n heat pad. Big thing is don't let yourself get constipated and peppermint tea. Please message if I can help. Sometimes just offloading is great. 🥰
Thank you! I'm drinking peppermint tea. Must admit, going to the loo isn't as easy so I'm taking Dulcoease daily plus senna when needed! I'm not sure how long I'll need to do that for? Life possibly? I drink 2 litres of water daily and have loads of fibre x Can I ask your age given decision not to have HRT?
Yes I'm 52 now but had to have decapeptyl etc as menopause nowhere near. I have read so much on hrt and endometriosis etc and it never reads well. I use lactulose and try and manage the toilet thing as best I can it's ok but then suddenly not 🙈. Enough people manage without hrt it's just getting things right isn't it. This site is amazing for advice though. I only really felt better post op in the last two months. 🥰
That's really helpful. I've just turned 48. When did you say you had your op? Can I ask, when did you start going out and walking after the op? X Did you do pelvic floor exercises daily? X
I did do the pelvic floor exercises in bed just very carefully and have carried on doing them. I wore cotton cycling shorts under my clothes for quite a few weeks to hold my stomach a little bit. They were very comfy. I walked about the house straight away just a bit but stayed upstairs for a few days till I could tackle the stairs again. I was very careful and built walking up but I think it took me about four weeks to go out into the garden far the weather wasn't great either which didn't help. I was very tired after and it was uncomfy to sleep.
I have had few ops but this took me the longest to bounce back.
Thank you x I'm sat in the garden as we speak. I walked a maximum of 10 mins at the end of last week......but not sure if I'm doing too much. I'm listening to my body. I made lunch earlier and I'm moving around the kitchen. Then sat down to eat/rest before getting up again.
I did lie in bed for a good chunk of the morning mind! X
You sound like your doing the right thing. I walked a bit far one day and felt dreadful after. So just small steps and be kind to yourself too. It's important to heal slowly and not sure how you feel but slowly was good. X
Actually, I think you said 6 months x
Really glad you're feeling better x
I had a hysterectomy and oophorectomy 21 years ago and would never touch HRT. I have never taken it at any point. I have had multiple excision surgeries. Many places were affected including bladder and both ureters. It seems like madness to me personally, why aggravate such a serious illness by having HRT? BTW I still suffer with endometriosis even now.
Best wishes on how to proceed. xx
Thank you. I think that will be the case for me too unfortunately. They said it was severe endo after my first lap so I know the hysterectomy was not a cure. I had adenomyosis too so at least that aspect has been a cure! XSorry to hear you are still struggling x Can I ask if you can recommend anything vaginally to help symptoms if you're not on HRT x Personal question but I'm guessing someone might have an answer. Some moisturisers are better than others. I was given oestrogen pessaries and cream last autumn which flared the endo up!
Can I ask how old you were when you had your hysterectomy/oophorectomy x
I was 46 when I had my hysterectomy/ oophorectomy. My GP has given me a moisturiser called
Yes VM which I find helps a great deal. I've got very sensitive skin but this one is really good. Perhaps it would help you. My doctor said it suits a lot of women who are sensitive to various things.
I'm sorry you are suffering after undergoing such a big operation.
I'm now 68 and I still know when I would be having a period and when I would be ovulating which were my worst times in the month. I've never felt I suffered for lack of HRT although I have no idea how I'd have felt on it. I just didn't want to do anything at all that could make my endometriosis worse.
Good luck with everything. It's all very difficult. xx
Thank you, that's so helpful. It's a flaming horrible condition. Can I ask, do you follow an anti-inflammatory diet/Fodmap etc. I've always had cow's milk and eaten wholemeal bread but I've tried to swap these since the surgery......gluten free/dairy free/ no caffeine rather than limited. Just wondered if you thought diet makes a difference as you had your hysterectomy a little while ago.Thank you x
Hope you have more good days than bad xx
I have been following the low fodmap diet for 7 years now. It is the only diet that has ever helped me. I eat lactose free cheese and have lactose free (dairy) milk. I don't particularly limit caffeine as it doesn't seem to be a problem for me and I don't have a huge intake of it anyway. I have one fairly strong coffee a day, otherwise I have tea and by late afternoon, I have decaffeinated tea.
I do keep my fodmaps low - even low fodmap stuff can become high fodmap if you have too much of it.
I use a checklist on my phone by Kate Scarlata although the terms are American. I find it very useful but I mostly know now what I can have.
My specialist endometriosis guy is very supportive of this diet and has a few patients on it who have been helped by it.
If I can help any further, please do ask. xx
Thank you X I wasn't sure about lactose free so started on Almond milk! I'll give it a go x
I discovered I definitely had problems with lactose, more reactive to that than anything and I had never suspected it. Arla do lactose free milk and Marks also do their own version. I can't eat a lot of fruit and veg, even the low fodmap ones, I have to be very careful of quantities. However, overall the low fodmap diet has been life changing for me because I now know I've had endometriosis since my teens. xx
Hi, I'm 9 days post op - hysterectomy for stage 4 rectovaginal endometriosis. Ovaries gone too. I'm worrying too lovely. I had this op for hemorrhaging- i had zero pain but post op I'm cramping 😫 it's very early days for us both and it takes a long time to heal so I'm trying to be pragmatic. Certain foods seem to be setting it off and I cannot even smell coffee without doubling over in agony. I had bread yesterday and exactly the same. I'm going to monitor my symptoms and take peppermint capsules L Glutamine and slippery elm to see if it helps. I'm on HRT (Have been on it for years) but I think it could be exacerbating the problem x
Oh bless you x I know we chatted the other day didn't we. I knew it wouldn't be a cure but was hopeful it would be better! It is from a bowel perspective/being able to sit more comfortably. I'm sipping peppermint tea as we speak. Coffee had the same effect on me!!! I couldn't stand the smell. That's improved!I've got a gluten free loaf in the bread maker and I've had mackerel for lunch! Throwing everything at it!!
As you said, it's early days so we need to be kind to ourselves don't we. I don't know about you but the guidance from the hospital was a little limited. Exercises mainly and instructions not to lift anything heavier than a full kettle! They haven't said how long I can stand for so have a stool in the kitchen and I'm just listening to my body!
Message anytime......it's nice to have a recovery buddy!
Take good care of you x
Ha this has cheered me up - i had nackeral for breakfast 🤣. Yes, I'll stay in touch xx you too xx
Well, if we don't laugh, we'll cry!!! 🤣
I didn't do well with Ev' Conti and found it caused flaring especially of bladder issues . However, instead I use the bio identical HRT ( I use Oestragel and Cyclogest pessaries as Uttagestin and I don't love each other) including testosterone and have significantly less bladder issues than before forever . Testosterone levels are particularly relevant for endo sufferers as it's often low for us and seems to be involved with more frequent urinary issues. Worth listening to some of the Louise Newson podcasts with bladder specialists on this one. She also has some info on Endo and HRT .
Localised dryness and tissue fragility in the pelvic region can cause more bladder issues with peri and menopause. Sometimes the chaos of the hormone extremes of this time can lead to end flares and UTI's. It's a question of finding the right balance for you. I wouldn't dismiss the whole hormone thing on the basis of a trial on Conti alone.
Pelvic floor issues can cause serious pain and issues with bladder dysfunction. I use physio approach based on hypopressives to improve state of play there. With surgery, tissue will have realigned and dropped and congestion as well as tissue change may occur with hormone shifts. For info try listening to @leah-brueg podcast link on instagram number 52or 57 with Dr Angie Muller a specialist on pelvic physio, surgery and endo. It's about an hour. Have a gander at @corerecoverypt regarding hypopressives.
Thank you for taking the time to respond x That's also really helpful info x
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