Trying to Conceive with Endometriosis: What the Guidelines Actually Recommend

The honest picture, with numbers

Endometriosis is estimated to affect around 10% of women of reproductive age — roughly 190 million women and girls worldwide, on WHO figures cited by NICE. Among women investigated for infertility, prevalence is far higher: NICE reports endometriosis in 25% to 40% of infertile women, compared with 0.5% to 5% of fertile women.

That second statistic is the one that gets misread in both directions. It does not mean endometriosis makes you infertile — most women with endometriosis conceive. It does mean endometriosis is substantially over-represented among people having difficulty, which is why it changes your referral timeline and why it is worth naming loudly at every appointment.

It is also worth knowing that the relationship is not only mechanical. Endometriosis can obstruct the fallopian tubes anatomically, but NICE also describes it producing cytokines that may be toxic to sperm or embryos. Stage of disease and difficulty conceiving are not neatly proportional; women with minimal disease can struggle and women with extensive disease can conceive quickly.

What the guidance says actually helps

Surgery, in specific circumstances

NICE guideline NG73 makes two clear positive recommendations for people trying to conceive:

• Offer excision or ablation of endometriosis plus adhesiolysis for endometriosis not involving the bowel, bladder or ureter, because this improves the chance of spontaneous pregnancy.
• Offer laparoscopic ovarian cystectomy with excision of the cyst wall, or laparoscopic drainage and ablation, for endometriomas, again because this improves the chance of spontaneous pregnancy.

The endometrioma recommendation comes with an important caveat you should raise explicitly: NICE says to take into account the possible impact on ovarian reserve, and notes that drainage and ablation may preserve ovarian reserve more than cystectomy. Surgery on an ovary removes some healthy tissue along with the cyst. That trade-off is yours to be part of, not something to discover afterwards.

For deep endometriosis involving bowel, bladder or ureter, NICE recommends discussing benefits and risks so you can make an informed decision — including whether laparoscopic surgery may alter the chance of future pregnancy, and the impact on fertility if complications arise. That is a genuinely uncertain area and the guidance says so.

Hormonal treatment: the point most often got wrong

NG73 states plainly: do not offer hormonal treatment alone, or in combination with surgery, to people with endometriosis who are trying to conceive, because it does not improve spontaneous pregnancy rates.

This matters because hormonal treatment is the mainstay of endometriosis pain management, and it is sometimes offered as though it were also a fertility treatment. It is not. It suppresses ovulation while you take it.

The corresponding reassurance is also in NG73: hormonal treatment for endometriosis reduces pain and has no permanent negative effect on subsequent fertility. If you spent years on the combined pill for endometriosis pain, that did not cost you fertility.

How you get investigated differs

NICE's fertility guideline NG257 recommends hysterosalpingography to screen for tubal blockage in people not known to have comorbidities, but recommends laparoscopy and dye for those thought to have comorbidities such as endometriosis, pelvic inflammatory disease or previous ectopic pregnancy — so that tubal and other pelvic pathology can be assessed at the same time. If you have endometriosis and are offered a standard HSG, it is reasonable to ask whether laparoscopy and dye is the more appropriate test in your case.

What to do next

1. Say the diagnosis at the first appointment, and say whether it was confirmed at laparoscopy. "Suspected" and "confirmed" route you differently.
2. Ask for the multidisciplinary route. NG73 states endometriosis-related subfertility should have multidisciplinary team involvement with input from a fertility specialist and access to fertility services.
3. Before any ovarian surgery, ask about ovarian reserve. NICE cross-references its ovarian reserve testing section for exactly this decision.
4. Do not stop pain management without a plan. Coming off hormonal treatment to conceive is often necessary, but going into it without a pain strategy is avoidable.
5. Get a semen analysis in parallel. Having one diagnosed condition does not mean it is the only factor, and endometriosis frequently absorbs all the clinical attention.

Where assisted conception fits

Surgery is not the only route, and for some people it is not the right first one. NG73 states that management of endometriosis-related subfertility should involve a multidisciplinary team with input from a fertility specialist and access to fertility services, and that this should include the recommended diagnostic fertility tests and other fertility treatments set out in the NICE fertility guideline.

Two considerations shape which comes first. Ovarian reserve is one — repeated ovarian surgery for endometriomas can reduce it, and NICE cross-references its ovarian reserve testing section precisely at this decision point, recommending AMH or antral follicle count to predict ovarian response and inform counselling about the likelihood of live birth with assisted conception. Age is the other. A 12-month recovery-and-try period after surgery costs more at 39 than at 29, and that trade-off should be made explicitly rather than by default.

Ask directly: given my age, my ovarian reserve and the extent of my disease, does surgery first or assisted conception first give me a better chance? A specialist should be able to answer that, and the answer will not be the same for everybody.

The diagnostic delay problem, and how to shorten it

The NHS acknowledges that endometriosis takes a long time to diagnose because its symptoms overlap with other conditions, and diagnosis often requires ultrasound, MRI or laparoscopy. That delay matters twice over when you are trying to conceive: once because pain goes untreated, and again because an undiagnosed endometriosis is an undiagnosed clinical cause, which means you do not get the earlier referral that a diagnosis would trigger.

If you have not been diagnosed but suspect it, the most useful thing you can do is present both halves of the picture in the same sentence. NICE lists infertility in association with symptoms including severe period pain, pain during or after sex, pain on opening the bowels or passing urine during periods, and cyclical bowel or urinary symptoms as a reason to suspect endometriosis. Saying "I have difficulty conceiving and these symptoms" is materially more likely to trigger the right pathway than mentioning either alone.

When to seek help

Endometriosis is a known clinical cause of fertility problems, which changes the threshold. NICE recommends offering referral at first presentation where either partner has a suspected or known clinical cause of infertility or a history of predisposing factors. ACOG likewise notes that its advice to seek evaluation earlier is "especially important if you have a problem that could affect fertility, such as endometriosis." Healthdirect Australia advises seeing a doctor straight away if you suspect fertility problems because of a condition such as endometriosis.

In short: you should not be asked to complete twelve months of trying before being investigated. If you are, that recommendation is the thing to quote.

The average time to an endometriosis diagnosis is long — the NHS acknowledges it can take a long time because symptoms overlap with other conditions. If you have severe period pain, pain during sex, or pain opening your bowels or passing urine during your period, and you are also having difficulty conceiving, NICE lists infertility in association with those symptoms as a reason to suspect endometriosis. Say both halves of that sentence to your GP together.