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Endometriosis UK
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Worried sick about our daughter.

I will try to keep this to a minimum, here goes....

My daughter was bleeding constantly, she was in terrible pain and flooding every day. She went to the doctor and was fobbed off to the STI clinic (even though she had not had a sexual partner for over a year she been tested since).

We ended up paying for a private gynaecologist £150 who said it was endometriosis immediately.

Since then she has been to the doctors continuously for help and she has been told that this is it, she has to live with it. She has also been told she has pre cancerous cells. Her new boyfriend feels unwanted because she is unable to have intercourse and she has become depressed. She cries, has panic attack’s and feels she cannot go on like this.

Can anyone give us some advice? Can I do anything to help her? We cannot bear to see her like this. She is a beautiful young girl with her whole life ahead of her. Would appreciate any help please.

10 Replies
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So sorry to hear your daughter's going through this. It must be horrendous for you all.

I would push for a scan & laparoscopy if she hasn't had one. Also, a CBT referral for chronic pain management, anxiety & depression.

The situation sounds similar to mine, I'm now on zoladex injections in prep for my 3rd surgery which has helped with pain as it induces a temporary menopause. And SSRI tablets for anxiety & depression.

It's such a lonely disease, just try to be there for her which I'm sure you are. Make the most of the good days and focus on doing small manageable things. I'm 27 with stage 4 endo and not being intimate with my partner causes guilt but he's understanding, if he wasn't I would have to say see ya later! Tell her to concentrate on herself first and foremost.

All the best x

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Thank you. I’m trying to get her appointment with the doctor now. I just hope there is light at the end of the tunnel because it affects all of her life and her doctor doesnt seem to understand or care

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All you can do is keep pushing, ask straight out for a referral to gynaecology, keep going to the doctors, try different GP's in your surgery, eventually you will find one who is sympathetic to women's issues and you will get referred on to gynaecology. Then the game starts again, keep pushing, ask for a lap, unfortunately this is how it is, you have to do the research, you have to be persistent in asking for what you want. in the past 10 years I have been to the doctors countless times, I have been under three consultants, had three laparoscopy's and finally have a date for a hysterectomy. It's a long, tiresome road, which is sad but be persistent, know your rights and you will get your daughter the help she needs. Good luck.

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Thank you. I am going to try what you have both said. She is 22 so an hysterectomy isn’t an option but I really appreciate your advice. X

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In my experience all the GP’s in my surgery were useless. Getting a referral to an endo specialist is the best thing you can do to try and get the right treatment for her. Research for any specialists within reasonable distance to you and try to get referred. There are a few Facebook groups that give lots of information on peoples experiences with different consultants.

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That’s really helpful too. Thanks il check for specialists in the area. My daughter is off work at the moment so there is the worry she will lose her job. I’m trying to remain positive.

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cks.nice.org.uk/endometriosis

Use the NICE guidelines to guide what you ask her GP for xx

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Ps it is quite clear that laparoscopy should be offered which will usually require an nhs referral to a gynaecologist. Hopefully the private gynaecologist has also written to her gp and she should have a copy of this letter, she can request it if not.

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Following on from the help we’ve had on here I’ve called her doctor and asked for another appointment. I called the endometriosis clinic in the local area and theyv given me some advice too 👍

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Sounds like you are moving forward then, we’ll done👍 Unfortunately it’s often a battle getting the right treatment for endo so do your research to keep yourself informed. Best of luck x

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