Forward thinking for conceiving

Hi everyone

I've just had a GP appointment where he thinks I probably have endometriosis. From reading your posts I'm pretty lucky that I only have symptoms around my period, including painful bowel movements, loss of old blood before period, pain etc. so I feel for you who have worse symptoms and more regular ones.

Anyway, I've been prescribed the progesterone only pill. I don't usually take a contraceptive pill, hoping there aren't any side effects. The doctor said he would recommend me to a gynaecologist if this didn't alleviate symptoms after a few months. All fine with me.

The only real reason I went after painful bowel movements for a few years, realised they were just at my periods (I had previously thought all my symptoms were normal and periods just sucked) was because I was concerned about not finding out and then finding it difficult to have children in about 5 years maybe (I'm 27).

Should seeing a gynaecologist be something I'm pushing for in light of this? Or should I not worry? I don't want to leave it and then find my ovaries taken over with endo at the point I need them to work. But I don't want a laparoscopy when I am coping ok and progesterone pill will help the things that affect me. Could I ask for an MRI to determine the extent of it so I can decide on the lap?

Just looking for advice or reassurance I suppose.

Thanks a lot

9 Replies

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  • Hi -treatment of endo is based on pain and/or infertility. Contraceptives can give relief for some women for a long time and if your bowel symptoms are just at period time then it might indicate local endo inflammation in areas close to your bowel. However, it is acknowledged that hormone treatment can mask underlying progression of disease, and this might be in areas other than your ovaries.

    A general gynaecologist is unlikely to offer an MRI as it is not the protocol for dealing with suspected endo in general gynaecology. This would be offered in a specialist centre if severe. deep disease were suspected which would usually involve symptoms at times other than your period. This can't necessarily be ruled out on this basis but there is an order to things.

    The link below takes you to the protocol for suspected endo. Trying you on 3 -6 months of contraceptives is the usual first procedure unless you are wanting to conceive in which case you should be offered a lap straight away. You can also opt for this choice over medical treatment. But what you need to be wary of with bowel symptoms is that bowel endo often can't be seen at a lap and you run the risk of being told you just have IBS if they don't find any.

    Treatment options depend on where in the UK you are. If you want to try contraceptives for say 6 months and you are in England you may then be best to get a referral to a specialist centre to check what bowel involvement you have rather than having a lap in general gynaecology. Outside England you unfortunately have to go through general gynaecology. Have a look at my post on finding a specialist.

    Protocol:

    cks.nice.org.uk/endometrios...

  • Thanks a lot Lindle

    So I wouldn't just be ignoring a problem going on the pill? I'm happy to do whatever I am told is best, so long as it doesn't affect fertility in a few years. Will the pill keep the endo at bay, so it makes no difference having a lap now compared to in a few years ? I'm just worried I'll be on the pill thinking everything is fine but then find it's quietly been getting worse. But yes my GP recommended 3 months of this to see how it goes so I can go back after that as I'm sure 3 months won't make much difference.

    Are people with endo advised to think about children earlier because of this?

    Also, for a while now I've had a weird sensation where I would imagine my right ovary to be. Like a little alien wiggling around. I get it regularly. I've not mentioned it because I imagined I would be told it's my bowel , but it is always low down in the exact same place. Could this be endo too?

    I am in the Uk, thanks!

  • Hi - I'm sorry as I don't think I have been clear in what I said.

    I'm saying the same as what you are concerned about. The pill can mask endo progression. There is no way of predicting how it may or may not affect it in any given woman as endo produces its own oestrogen and can feed itself and the pill doesn't affect this means of oestrogen production. There is no way of knowing in any particular woman how efficient that form of oestrogen production is. The only way to find out the extent and location of your endo and potential implications for your future fertility is through a lap and, in the case of bowel involvement, through an MRI but this would only be done in a specialist centre if they feel it appropriate. A lap in general gynaecology can miss it so my last para means that you can try the pill for a while but only while you wait for a lap in a centre to come through if you are in England. We have a right to choose any consultant which means you can insist on having your first lap in a centre. If you are in Scotland, Wales or NI you will unfortunately have to go through general gynaecology first but you are still entitled to a lap as the protocol I referred to above refers to the whole of the UK.

    Basically your own instincts are right and you need a lap sooner rather than later, and in a specialist centre if you are in England. Send me a private message if you want more detailed help depending on where you are in the UK. I have a few messages to reply to so don't worry if it takes a few days. x

  • Oh sorry for misunderstanding you! Thanks so much for your detailed reply.

    I am in England, down in very west Devon on the cornwall Devon border.

    I'm not sure what makes a specialist centre so I will message you.

    Thanks a lot!

  • I had silent endo. No pain but heavy periods. It was discovered during infertility tests and at my lap they discovered I was stage 4! My ovaries were stuck to my bowel and stuck together! If you would like children I would recommend seeing a gynaecologist. The pill may alleviate the symptoms but the endo will keep growing and may impact infertility. good luck!

  • Thanks Smileycat. I think it sounds like I should get referred. After all just because I get referred to speak to someone who I am confident knows the answers, doesn't mean I must have a laporoscopy which was my GPs concern that I'd be putting my fertility at greater risk than just leaving it. He seems nice but it would probably make a lot of difference going to a centre specialised in endo and gynecology. I have emailed my nearest accredited centre so will see if they reply, but if not will try to get referred to them.

    Does anyone know whether endometriosis sufferers are commonly advised to think about having children earlier?

  • Endo has impacted my fertility as it was pretty advanced by the time it was found. My gynaecologist was BSGE and specialised in surgical family planning and therefore the lap did not affect my fertility. It's all down to the skill of the surgeon. I'm 37 now and spent almost 3 years trying naturally until the endo was uncovered. I can only conceive by IVF and that is due to the extent of the endo when discovered, which surprised my consultant as I had relatively few symptoms.

  • I had a laparoscopy over a year ago and they found stage 2 endo on my ovaries. I've been diagnosed with ibs for about 10 years but they never ever even mentioned endo to me until my husband was undergoing fertility investigations and they decided to send me by chance! It's great your dr is clued up enough about endometriosis cause my dr would just say it was ibs and that's it.. They never cared that I have awful periods!

    I'd recommend asking to have your ibs investigated, I'm currently undergoing investigations at the moment. Because I'm trying to conceive they have sent me for the least invasive investigations possible. Had a sigmoidoscopy, not a nice experience but take gas and air if you can so you aren't aware of what's going on as much. Also being sent to a dietician to try rule out if I'm eating anything that flares it up. Although I know what can, I'm just interested to see what they have to say. Also being sent for a small bowel MRI soon. It's the MRI where they put you on a special diet for a few days, then get you to drink some liquid and give you an injection of dye.

    I'd also recommend asking to be sent to a consultant. If you can get a laparoscopy done it would properly diagnose you. It's the only way to tell if it is endometriosis.

  • This has all been done through Nhs so just ask your gp to refer you.

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