Living well after hysterectomy (with ovaries retained) – An informational guide

Prepared by QENDO Endometriosis & Pelvic Pain Support Australia

1. What happened and what’s still happening

When a hysterectomy is performed (removal of the uterus, sometimes the cervix) for endometriosis/adenomyosis, but the ovaries are kept, it means:

• There is no longer menstruation, and the uterus is removed, but your ovaries (which produce hormones including oestrogen & progesterone) continue to function. Endometriosis UK+2East Sussex Healthcare NHS Trust+2

• Because endometriosis often involves tissue outside the uterus (on ovaries, fallopian tubes, pelvic lining, bowel, bladder) the removal of the uterus alone does not guarantee full symptom relief. Endometriosis+1

• Retaining your ovaries means your body still has hormonal cycling (or functioning ovaries) which can continue to drive remaining endometriosis lesions or pain mechanisms. For example, one leaflet states keeping ovaries may lead to “ovarian retention syndrome” (pelvic pain/adhesions) in ~5% of women after hysterectomy. East Sussex Healthcare NHS Trust

• Trauma-informed lens: You may still carry the lived experience of chronic pain, prior surgeries, fertility and identity impacts. The body may be saying “we’ve been through a lot” and change is ongoing.

2. Why you may still have symptoms

Here are several reasons you might continue to experience pain, fatigue, hormonal fluctuations or other symptoms:

• Some endometriosis lesions may remain either because they were not fully excised at the time of surgery, or because they are in locations that are hard to remove (e.g., bowel, bladder, nerves). Endometriosis.net+1

• Hormones produced by your ovaries (oestrogen, progesterone) can stimulate residual endometriosis or pain mechanisms.

• You may have developed central sensitisation or changes in pelvic-floor / nervous system function due to long-standing pain, which means pain persists even when the original source is reduced. Endometriosis.net

• Even though the uterus is removed, other structures (e.g., ligaments, ovaries, pelvic nerves, scar tissue/adhesions) may still contribute to symptoms such as pelvic pain, sexual discomfort, bladder or bowel sensitivity.

• Your body may also still be adjusting hormonally and emotionally to the surgical, physical and identity changes of hysterectomy + pelvic-pain history.

3. What to expect physically & emotionally

Physically you might experience:

• Changes in periods: no more bleeding from the uterus, but you may still have ovarian-hormone swings.

• Pain: perhaps less severe, or in different locations, but you may still feel pelvic, back, bladder, bowel or sexual pain.

• Hormonal symptoms: If ovaries retained, menopause is not immediate, but you may reach earlier menopause; if ovaries have reduced blood supply post-surgery this may accelerate. East Sussex Healthcare NHS Trust+1

• Sexual and bladder/ bowel changes: Some women experience vaginal dryness, changes in sensation, changes in bladder or bowel function after hysterectomy. Endometriosis UK

• Recovery: Even after surgery “successfully done” it can take months (or longer) before you feel like “you” again. The Endo Foundation

Emotionally / psychologically:

• Loss/grief: removal of uterus can trigger feelings of loss (fertility, identity, body integrity).

• Relief mixed with uncertainty: you may be relieved that a major step was taken, yet still anxious because symptoms persist or change.

• Trauma-aware: if you’ve had long-term pain, multiple surgeries, fertility challenges or stress, the body and mind may still be processing this. It’s valid to feel vulnerable, angry, sad, relieved—and everything in between.

• Self-identity: adjusting to no longer having a uterus (despite ovaries retained) may impact how you view your body, femininity, sexuality or sense of self.

• Empowerment: this is an opportunity to partner with your body, listen to it, and become an advocate for your health and wellbeing.

4. Supporting yourself – body & mind

Here are practical, trauma-informed strategies to support healing and resilience:
A. Body-focussed

• Gentle movement: gentle pelvic floor and core rehabilitation, walking, stretching, yoga or pilates guided by a pelvic-health physiotherapist (especially if pelvic floor or scar tissue changes are present).

• Pain management: ensure you have a pain-plan that may include medications (as prescribed), heat/ice, manual therapy, pelvic-floor physio, trigger-point release, gentle exercise.

• Hormonal review: if you’re still having symptoms (e.g., mood swings, hormonal swings, early menopause changes) talk with your GP/gynecologist about keeping ovaries, hormonal status, bone health, and whether hormone replacement therapy (HRT) is relevant. (Note: keeping ovaries means HRT may not be needed immediately, but hormone health still matters.)

• Nutrition & sleep: focus on anti-inflammatory diet patterns, good sleep hygiene, stress-management (mindfulness, breathing, gentle relaxing activities).

• Scar/adhesion care: if you had significant surgery, working with a physiotherapist, osteopath or massage therapist experienced in post-operative pelvic surgery can help with adhesions, myofascial restrictions.

• Ongoing monitoring: bone health (especially if hormone production changes), cardiovascular health, and sexual health (lubrication, comfort, vaginal health) should be reviewed with your clinician.

• Self-advocacy: keep a symptoms + trigger journal (pain location, bowel/bladder, mood, cycle/hormone change if any). Bring this to your GP/gynea for discussion.

B. Mind-focused (trauma-informed)

• Safe space: allow yourself space to feel whatever is coming up (loss, relief, anxiety, confusion).

• Educate yourself: knowledge is power. Understanding what’s still happening in your body helps you co-navigate with your clinicians.

• Peer and professional support: connecting with other people who’ve been through similar experiences (peer support groups, online forums, live groups) can lessen isolation. Also consider trauma-informed counselling, especially if surgery and chronic pain have been part of your life for a long time.

• Body-listening: your body “remembers” the pain, surgeries, and your nervous system may still be on high alert. Gentle practices that calm the nervous system (breathwork, meditation, gentle yoga, grounding) are helpful.

• Celebrate wins: acknowledge the courage it took, the decision you made, and all the small steps toward healing each day.

• Future-facing: you may now focus on “what next” rather than only “what was”. What do you want your relationship with your body to look like now? What does wellbeing look like for you?

5. Follow-up care and key questions to ask

• “Should I continue seeing a gynae/endometriosis specialist even though my uterus is removed, and ovaries retained?”

• “Do I still need pelvic‐floor physio, or specific post-hysterectomy rehab?”

• “What are my current ovarian hormone levels? Has my ovarian function changed after the surgery?”

• “Do I need bone density monitoring (DEXA) because my ovaries are retained but may be functioning differently?”

• “What HRT (or hormone monitoring) is right for me, given my endometriosis history and retained ovaries?”

• “What are my possible risks now (e.g., adhesions, residual endometriosis, central sensitisation) and how will we monitor them?”

• “What pain/pelvic floor specialists, allied health supports (physio, dietitian, psychologist) do you recommend?”

• “What symptoms or warning signs should I look out for and raise with my clinician?”

• “Are there peer-support groups, services for people with endometriosis after hysterectomy that I can access?”

7. Important takeaway messages

• Keeping your ovaries means your body continues to have hormone production: that’s a strength (avoiding surgical menopause) but also means the processes that drove your symptoms may still be active.

• A hysterectomy is not a guaranteed end of symptoms – but it can be a meaningful component of your journey.

• Healing is not just surgical: it’s holistic (body + mind + nervous system + lifestyle + self-compassion).

• You are not alone: persistent pain or symptoms after hysterectomy are more common than you might expect; reaching out for specialist input, pelvic-health physio, trauma-informed counselling and peer support helps.

• Your body is still “you”: you are more than your uterus. You are the person who chooses how to live, heal, advocate and support your body now.