Hi I had a hysterectomy with ovary removal in March. Was wondering if anybody else who has had this still felt like they were having cycles . The last couple of months for a few days around the same time of month I feel like I'm getting a period, down to the diarrhoea and horrible feeling in abdomen. Obviously I don't actually get a period, but just wondered if anyone else gets this and if so do you know why?

24 Replies

  • Hi Jean i had total hysterectomy same month as you. I have not experienced that symptom. Have you spoken to your doctor or the nurse specialist and see if they have come across it with other patients? I hope apart from this you have recovered well x

  • Have follow up with consultant on 4th August so will ask him then. Unfortunately I suspect some endo has been missed. I was doing really well until I changed my hrt from tibalone to Elleste solo.

    I've had lower back ache for a year now which isn't getting better (despite Mir showing no problems) , pains in buttocks and lower abdomen. Hoping consultant can help next month.

    How are you feeling now?

  • Oh I hope not! I thought they won't start HRT until at least 6months post hysterectomy? Let's hope your consultant can shed light. My consultant said he might start me on HRT perhaps by October.

    I still have my ileostomy which I hope can be reversed in September. I had urether stents during my surgery and removed 6 weeks post op but I recently had to be readmitted and found my urether is blocked againn so I have new stent which will now have to stay for at least 3 months. Otherwise I thought I was doing fine.

  • Omg I thought I'd been through a lot. I don't know how stay so strong. Hope everything improves for you.

  • Thanks Jean. I hope you get the pains sorted. It's difficult to stay strong, sometimes it feels like things are going backwards, I just try to compare how I was pre-op and I have to say despite the recent hiccups I do feel a lot better.

  • Hi Jean - there are a few possibilities. You could have an ovarian remnant (not all of an ovary removed) that is still behaving like an ovary and producing ovarian oestrogen to maintain a cycle. That could continue to stimulate any residual endo as well as HRT - you could have residual endo on your bowel or US ligaments (not sure where you had it) which could give you cyclical IBS type symptoms due to local inflammation. Or in the absence of residual endo an ovarian remnant cycle could be giving you hormonal IBS symptoms. Endo itself has its own cycle that is independent from the menstrual cycle but there is little documented about this or whether the presence of ovaries/uterus are thought to be necessary for this to operate - i.e.whether there would be communication needed between the endometrium and endo lesions - but if you do still have endo it could be maintaining its own cycle.

    In my own case I had a huge multicystic/multi focal mass that grew under the influence of HRT after TAH/BSO that then became independent with its own blood supply to maintain itself with its own oestrogen production after HRT was stopped. It actually became much more aggressive after stopping HRT. This ruptured every month for 4 months before I got attention so clearly had a monthly cycle. It was incompletely removed in general gynaecology and I then went on to have stage 4 with a 2 monthly cycle. I knew this because I had a particular set of symptoms occur at that time interval including extremely high blood pressure which I knew indicated ureteral endo. Sure enough I turned out to have endo on both ureters. My case could be considered anecdotal but it is a fact that my endo after TAH/BSO has its own cycle.

    The most important thing for you right now is to know what are your oestradiol levels. I assume you have had blood tests since going on HRT so what are they running at?

  • Hi Lindle, thank you so much for your reply. I was actually wondering about ovarian remnant, as a lot of the pain is where left ovary was. I'm due to see consultant on 4th August so will discuss all this with him then . Will also give GP a ring to organise a blood test to check oestradiol levels. Been on Elleste solo for two and a half months now and everything seems to tie in with starting this.

    I really appreciate your help and advice.

    Hope you're ok.

  • It is so important Jean to monitor levels as the post menopausal endo associated with HRT is aggressive. It is rare and very little documented so most specialists are unlikey to know about it but you can protect yourself by keeping your E2 levels low. It was too late for me as I had no knowledge then and was maintained on very high levels. X

  • Hi Lindle, GP did say he wanted to review at 3 months . Will definitely get levels checked. Thank you

  • Come back when you get the results Jean. As you will know tibolone is not E2 but a synthetic steroid that mimics it and has oestrogenic and progestogenic effects by acting on the receptors in cells. It is not thought to stimulate endometrial growth so probably doesn't stimulate endo. However Estelle solo is oestradiol so this would tie in with potential reactivity. There was someone else on here in exactly the same situation and when she got tested her levels were high and an ovarian remnant was suspected. All gps/gynaes should test levels as a matter of course and definitely before changing HRT types.

  • Will do thanks again.

  • Hi Lindle, sorry it's taken so long to get back to you but GP was on holiday and I don't trust any of the others at the surgery.

    Level was 129?

    Don't know whether that's good or bad but GP said it was normal.

  • Hi Jean - is that pmol/litre or pg/mol?

  • Hi I'm not sure he did say but can't remember.

  • Morning I'm exactly the same😒It sucks, aldi thought my life would be better n pain free:-( the only difference is I don't bleed? I saw my consultant and he said I need hrt patches, and I'm scared don't know what to do???? I also had severe endometriosis which he said scar tissue can still cause pain:-( great!! Be good to know if u are on any form of hrt! Andrea 🙂

  • Hi Andrea, I'm on Elleste solo. I'm going back to see consultant beginning of next month so I will see what he suggests.

  • Morning what is elleste solo? N u not getting on with it

  • It's hrt in pill form. I'm getting on well with it but unfortunately it seems like some endo has been missed.

  • No it's patches

  • No the one I'm on is pill form, I can't have patches as the sticky irritates my skin. There are different forms of hrt ie patches , tablets greats and gels.

  • Hi Jean. I had my hysterectomy and ovaries out in February. No I don't get cycles as such however I do occasionally get pelvic pain low down. Did you have adhesions in your abdomen? I had loads and do wonder if they are reforming sometimes. Best wishes Julie x

  • Hi Julie, it rather looks as though some endo has been missed and has become severe enough again to create its own cycle, or I have an ovarian remnant causing it. Will talk to consultant next month.

  • Hi Jean

    Yes - I saw that Linda had been in touch with you. I'm glad about that as she really knows all about this stuff doesn't she? Wishing you luck with your ongoing treatment. Julie x

  • Thank you Julie.

You may also like...